Guidelines on making a complaint

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Catherine M
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Guidelines on making a complaint

Postby Catherine M » Tue Aug 14, 2007 4:42 pm

Guidelines on making a complaint to a hospital

The complaints process
You have six months to complain but try to do it as soon as possible. The time limit is usually from the date the event occurred, or six months from the date that you first became aware of it.
The hospital can decide to waive the time limit where it would be unreasonable to expect you to have complained within the six month limit, for example because of grief.

A hospital (or any part of the NHS) will have a complaints procedure which you can ask to see. The Department of Health website www.dh.gov.uk and the NHS website www.nhs.uk will also have details. The Citizen’s Advice Bureau’s advice site also has details of the processes involved. See www.adviceguide.org.uk.

Writing a letter is the first stage in the complaint process. This stage is called Local Resolution. If you wish, it may also involve a meeting between you and the staff involved and possibly someone senior. If your letter and/or a meeting do not resolve the matter, you may then take your complaint to the second stage: in England to the Healthcare Commission for independent review; to the Health Board in Northern Ireland; the Scottish Public Services Ombudsman; the Independent Review Secretariat in Wales.
If this still hasn’t resolved the matter, the next stage would be to go to an Ombudsman. The Department of Health’s website contains full details of the process and contacts. The individual NHS websites for England, Northern Ireland, Wales and Scotland have details of their respective complaint procedures. The addresses are all below.

If you are taking legal action against a hospital you cannot use the NHS complaints procedure. In this situation, your solicitor will be advising you on the stages of litigation.

Getting help with your complaint
In England, you can get help from ICAS and PALS. PALS is the Patient Advice and Liaison Service. They can give you information about the complaints process and in some cases may be able to help you sort out less serious matters. They can’t assist you with making your actual complaint. ICAS is the Independent Complaints Advocacy Service and they can help you write a complaint letter and assist you throughout the process. It is free and confidential. Details of both organisations can be found on the Department of Health Website www.dh.gov.uk and the NHS website www.nhs.uk.
In Northern Ireland, Health and Social Services Councils are independent bodies to help you with your complaint. See www.n-i.nhs.uk.
In Wales, Community Health Councils (CHCs) can help. These are statutory lay organisations who will help and advise with a complaint. See www.wales.nhs.uk.
In Scotland there are independent services that can help you. Each Health Board will be able to tell you what services exist locally. See www.scot.nhs.uk.

Writing your complaint letter
1. Before you start writing, think about what you want the recipient to do when they have read your letter. For example, do you want them to: Apologise/change their policies/investigate further/give you more information/justify their actions. If you know why you are writing, it should help you stay focussed.

2. Be concise. Get your main point over in the first sentence, so that the person reading has a context and can understand straight away why you are writing to them. Try not to ramble. If your letter addresses several points and goes over one page, think about using headings and numbering. Alternatively, it can be helpful to organise a lengthy letter into a main letter with appendices attached. The main letter will contain concise points and the details will be attached separately.

3. Be constructive. Even if you are understandably seething with rage or sadness, try to encourage a positive response by offering constructive solutions wherever possible. A complaint letter is a form of negotiation: you are trying to persuade someone to do something they don’t necessarily want to. If you can be constructive, the reader will warm to you more than if your letter is one long angry rant.

4. Include a compliment. Tactically, it can be extremely productive to include at least one. If you witnessed examples of good practice in a hospital, say so. Give praise where praise is due. This is much more likely to persuade the reader that you are a reasonable person and therefore worth listening to.

5. Don’t try and use language that is not ‘you.’ Be authoritative but don’t try to be unnecessarily wordy. Short sentences are always a safe option. They avoid the confusion that can sometimes arise from long convoluted sentence structure.

6. Be very specific in what questions you want answering, and remove all opportunities for generalised answers. Use dates, times and names wherever possible when describing events. You could also quote from medical notes if you have them, giving locations/names/dates/times as references.

7. Address your letter to the Chief Executive.

8. End your letter by saying that you look forward to a response within 25 working days.

9. If you are writing on someone’s behalf, (not deceased) you need to say you have their consent and get them to countersign the letter.

10. Complaints to hospitals usually involve more than one simple issue. If your letter contains a number of complex complaints, you may well find that the hospital’s response ignores some of your trickier questions or deals with others inadequately. There are two ways to deal with this. First is to number all your questions and to say explicitly that you would like each point addressing. Second, resign yourself to having to write a follow up letter asking the hospital to address the points they failed to in their initial reply. You may have to repeat this approach until you are satisfied they have answered your questions to the best of their ability.

11. Having the medical notes for either a living or deceased person can be extremely useful when composing a letter. However, it is possible to proceed without them. Sometimes it can take a while to receive medical notes, so you could write an initial complaint letter and say that you will be following your letter up with another once you have had sight of the medical notes. For help in obtaining medical notes see either www.nhs.uk or look in the Complaints and Legal section in this Forum. There is a Sticky topic ‘Obtaining Medical Records (Updated)’.

10. Send your letter recorded delivery.

11. Finally, If you get really stuck, Graziella, this site’s administrator, may be able to help. Please email her at info@cdiff-support.co.uk

What else can you do
1. Copy your letter to your MP (find your MP on www.theyworkforyou.com). Send a covering letter asking your MP if there is anything they can do to help or support you. (House of Commons, London SW1A OAA)

2. Copy your letter to the Healthcare Commission or equivalent body in the rest of the UK. The Healthcare Commission does not investigate individual complaints but this is who you would contact next if you are unsatisfied with the response from the hospital. Even if you do resolve issues it is important that these agencies are aware of the problems. (www.healthcarecommission.org.uk)
Edited: From 1 April 2009, the Healthcare Commission is being replaced by the Care Quality Commission. Also, if your complaint is not resolved by the hospital, the second stage will be to refer complaints directly to the Ombudsman.

3. Copy your letter to the National Patient Safety Agency (The Public Enquiry Manager, National Patient Safety Agency, 4-8 Maple Street, London W1T 5HD). Again, they do not investigate individual complaints but they are the body responsible for promoting a culture of reporting and learning from mistakes. They collect data so make sure they have got yours. Or you can report incidents online (see Links).

4. Copy your letter to the Health Protection Agency (see www.hpa.org.uk). Again, they do not investigate individual complaints but are responsible for providing support and advice to the NHS. Its functions are to protect the community against infectious diseases and they should be informed when this is not happening.

Freedom of Information, Data Protection and Health Acts
You can find out additional information which may help you formulate your complaint under these Acts.
Broadly, the Freedom of Information Act 2000 gives individuals and organisations the right to see official information from public bodies. So if you want to see reports, statistics or policies from a hospital, for example, you would make a request in writing under the Freedom of Information Act.

You could also make reference to the Health Act 2006 which sets out a code of practice for the prevention and control of healthcare associated infections.
Edited: From 1 April 2009, this Act is being replaced by The Health and Social Care Act 2008
All NHS bodies have to comply with this code of practice which states that individual bodies must have their own infection control programmes and policies in place. You could ask to see those of your hospital to check if they were being followed. If they were not, you could quote the policies back at the hospital, relating them to your own experiences. Demonstrating that a hospital has not followed its own policies and procedures will undoubtedly strengthen your complaint.

The Data Protection Act 1998 gives a person the right to see any personal information held about them, such as hospital medical notes. Obtaining the notes of a deceased person falls under the Access to Health Records 1990. Under this legislation when a patient has died, their personal representative or executor or anyone having a claim resulting from the death (this could be a relative), has the right to apply for access to the deceased’s health records.

For full details on Freedom of Information and Data Protection see the Information Commissioner’s Office website www.ico.gov.uk. The Information Commissioner’s Office is an independent authority governing access to official and personal information. For details on the Health Act and Access to Health Records Act see the Department of Health's website www.dh.gov.uk


What follows next in this topic thread are some examples of complaint letters written by members of this forum. The letters have been written for a variety of reasons, from complaints after the death of a relative, to complaints to a Member of Parliament. The examples may help you with your own letter. We are not necessarily endorsing any particular letter: please have a browse and hopefully they will give you a few ideas.

Please post your examples of complaint letters here after removing all names and any references that could identify people or places.
Last edited by Catherine M on Tue Aug 14, 2007 9:55 pm, edited 1 time in total.

Annie

Postby Annie » Sun Aug 19, 2007 7:05 pm

Right, a cup of tea is in order, it's a long one:

Dear Ms D

My father, Mr P, was admitted to W hospital on 24th November 2006 and discharged on 9th January 2007. Based on our own personal experiences as a family we have serious concerns that there are failings under the statutory and recommended guidelines issued by the various agencies and departments that govern your hospital. I am writing this letter on my father’s behalf.

I am writing to you, as the CEO holds the position of Accountable Officer. You also have overall responsibility for ensuring that all complaints are dealt with effectively.

In particular there has been a failure in your duty to comply with sections 1, 2, 3, 4, 5, 6, 7, 10, 11 of the Code of Practice for the Prevention and Control of Health Care Associated Infections (Health Care Act 2006). This Code has been established to help you prevent and control HCAI. There has also been a failure to comply with the Core Standards in the Domain of Safety, Patient Focus, Care Environment and Amenities as set out in the Standards for Better Health document.

It is obvious that despite the amount of information available the rules and regulations are not being followed by the staff carrying out the day to day activities in your hospital. This can only be down to lack of education and training, incompetence, or negligence. I have no desire to apportion blame to individuals but feel someone should be made aware of what has happened as patients and visitors are being put at risk and this cannot be allowed to continue. I am raising these issues so they are addressed and matters improved as quickly as possible.

My father was first admitted to O ward under the care of the Respiratory doctors who we felt were as open and as honest as they could be, explaining what tests had to be done and what the possible outcome may be. I suspect we were able to get this information easily as there were generally Doctors around during visiting hours. The same cannot be said of the Cardiology department. We had to continually ask for information about what was happening. Different people were telling us different things. It was also clear that two different teams had different views on what was wrong with my father. We fully understand and accept that medicine is not always an exact science and it takes time to reach a diagnosis. In our experience however, the lack of knowledge and care particularly in the area of infection control caused unnecessary harm, stress, worry and delays in my father’s treatment.

I have outlined below a factual description of some of the events that occurred during my father’s stay.

24th November 2006: My father is admitted to hospital following a referral to the Chest clinic as his symptoms and x-rays are giving cause for concern. He has already been on antibiotics for 10 days prescribed over the telephone by his GP. Further antibiotics are prescribed to treat possible pneumonia. My father has an Echocardiogram on 28th November.

29th November 2006: Dr M and Dr J (Respiratory) diagnose a very leaky Mitral Valve. Tests on lung fluid indicate no infection and that the fluid on the lung is present due to being forced there from the leaky valve i.e. Pulmonary Oedema. They will now refer to Cardiologists.

30th November 2006: Cardiologists visit my father on O ward and say the problems with the lungs need to be investigated. My sister says that the Respiratory doctors have said the heart is causing the problem with the lungs. Cardios say there is nothing in the notes. Then they come back and say they will refer my father to H hospital for an Angiogram and he will be transferred to the Cardiac Ward.

1st December 2006: Whilst visiting my father on CC1 we ask if we can speak to someone about what is happening. The Sister comes to the bedside and says the diagnosis is atypical pneumonia. We tell her that the Respiratory doctors have said it is not atypical pneumonia and it is the Mitral Valve causing the lung problem. She implies that Cardios know what they are doing ‘This is what we do here, heart and pressures’. She says she will get a doctor to come and speak to us. The Sister keeps telling us the doctor will be with us in a minute. After almost 2 hours Dr D comes to the bedside and confirms that although there is a diagnosis of Mitral Regurgitation my father can return as an outpatient to have this dealt with. He will not now be referred to H. Cardiologists are referring my father back to Respiratory doctors as his chest x-rays are very unusual.

4th December 2006: The information given to us on the 1st is all confirmed by Dr C who says this is definitely a lung problem and not a heart problem. It will be ok for my father to go home with this condition, normal everyday activities can be carried out but no heavy lifting. They are still referring my father back to the Respiratory doctors.

5th December 2006: Dr J (Resp) visits my father in the morning to say the Cardio and Respiratory doctors are having a meeting this afternoon as they cannot agree on what the x-rays are showing.

Whilst visiting my father he removed his dressing gown and I noticed he still had an IV line in his arm despite not being given IV medication since 29th November. It had been there since the 24th November. We asked the nurse if this needed to stay in and she appeared shocked and said the line should be changed or removed after 3 days due to the risk of infection. She removed it immediately.

After visiting my father in the afternoon I met Dr C (Cardio) in the corridor. I asked him if the meeting with the Respiratory Doctors has taken place. Dr C says no and it is late to organise a meeting now. I suggested that as it is clear that there is a disagreement over what is wrong with my father then surely it is time to consult with someone from another hospital who maybe has more experience, maybe someone else can shed light on the unusual x-rays. I also point out that my father has not had any medication or treatment for 2 days and time is passing. Dr C says he will take my comments on board and bring it up at the meeting that hopefully will take place tomorrow.

During the evening of 5th December my sister was told that my father was being moved into isolation as he had a ‘bug’. My sister had to ask for the name of the bug and was told Clostridium Difficile. She had to ask the staff for more information and only then was she handed a photocopied leaflet.

My father first showed symptoms of c.diff (diarrhoea) on 1st December 2006 when a stool sample was sent for analysis. C.diff must have been suspected because we now know that a test for this must be specifically requested and there is a risk factor when a patient has been on antibiotics. Despite this and all the recent media attention neither my father nor us were given any information or advice about specific hygiene issues. My father was not isolated immediately and continued to use the only toilet on the ward shared between 6 patients. My father is 74 years old and nobody sat down to explain to him clearly how he could easily end up infecting other patients on the ward.

During my father’s time on ward CC1 there was another patient in the same department with the same surname. On one occasion a porter arrived to take my father for a scan, my father did not know anything about this so asked him to check, when he checked he found out that it was the other patient with the same surname. I told my father to be vigilant about this so when someone arrived another morning to take blood for sampling my father showed his wristband and asked them to double check his hospital number. Again they had the wrong patient. Hopefully these mistakes would have not resulted in anything serious happening but these type of incidents lead to a general feeling of mistrust between patient and healthcare staff.

5th December 2006: My father was moved into an isolation room in CCU. He was told that the t.v. was not working. Even if, as a pensioner, he had been able to afford the scandalous price of £90 to watch t.v. whilst in isolation for 30 days in your hospital there was no screen attached to the locker. The staff said they ‘keep asking about it’. I brought him a portable t.v. from home. He said this kept him sane, during his time in isolation only a couple of the nurses spent any time just chatting to him, the rest only came in the room to give him his medication and carry out basic nursing duties. We were not allowed to visit until 3.00pm so until then he had very little human contact. In the room was a sink (with a supply of hot water in the early morning only) and a plastic bowl for him to shave and wash his whole body. There was not even a mirror on the wall so he could see to shave himself. I asked the nurses if they had a mirror that my dad could use until I could bring one in myself the next day. I got a very curt reply – it’s not a service we provide, giving mirrors to patients. I said I understood that but my dad would like to shave himself in the morning and could not leave the isolation room to use the bathroom so therefore had no access to a mirror. She said they don’t give mirrors to patients because they could break them and hurt themselves. I wondered if they give patients knives and forks to eat with.

6th December 2006: I telephoned the ward at 12.30pm to see if the recommended antibiotic treatment i.e. Metronizadole for c.diff had commenced. I was told that Microbiology had only just put the result on the computer and they would get the Doctor to prescribe it now. When I visited my father in isolation there was a notice containing the wording ‘visitors do not need to wear aprons or gloves’. I had not passed any staff on my way in but I thought I had better check to see if this was correct and was told that we must wear aprons and gloves at all times. I pointed out the discrepancy on the notice on the door but this remained unchanged.

On entering my father’s room there was a red plastic bag on a metal frame half full of dirty linen. My father told me it was there when they moved him into that room the night before. I called a nurse to ask her to remove it and she told me it was there from the previous patient but not to worry, as that patient wasn’t infected.

Before leaving the room after removing my apron and gloves I washed my hands in the sink in the room to find that the water was freezing cold. I asked a nurse if they knew about this and was told to leave the tap fully open for 10 minutes then it might start running warm, she said it had been like that for a year.

Having researched c.diff on the various Department of Health websites I was worried that the staff had not given my father or us as visitors enough information about hygiene issues. I was concerned that without the correct information my father or us as visitors could be putting other people at risk. The leaflet we had been handed by the ward staff on CC1 entitled Clostridium Difficile had been issued by Infection Control. I called them and spoke to J. I told J that I felt the room my father had been put in had not been cleaned prior to his arrival, there was no hot water and I was also concerned that we had not been given enough information about the prevention of the spread of c.diff. I also told J that the leaflet itself was missing an important piece of factual information about how c.diff is spread i.e. the faecal oral route. The impression given by the leaflet is that you ‘catch it’ from antibiotics. J said she would investigate all these issues and get back to me.

J visited us on the ward. I had now also noticed a ‘sharps’ bucket, on the bottom shelf of a trolley in my father’s room which appeared to be full to the brim with waste, including a pair of green handled scissors sticking out of the open lid. I pointed out to J that none of this waste was from my father's treatment so this had obviously been left in the room from the previous patient. She asked a nurse to remove it. J fully explained the importance of hygiene issues to my father and myself, including thorough handwashing with soap and warm running water, that alcohol gels do not kill the c.diff spores, the decontamination of surfaces has to be done with proper cleansing agents i.e. those containing chlorine or bleach. I asked when the commode should be cleaned and J told us that the nurses should be cleaning this after each use. My father told her that this was not being done and he was cleaning it himself with the bleach cleaner I had brought in myself. J said this was unacceptable and she would speak to the staff on the ward. She also left us some hand and surface wipes. We ran the tap while she was there and timing it on the clock in the room it took over 4 minutes for the water to start running tepid. J told us that two tests had been run by Facilities that also confirmed the water was taking longer to run warm than the regulations allowed. J also said that she agreed the leaflet on Clostridium Difficile did not contain the correct information about how the infection is spread and it will be re written. I used the surface wipes to start cleaning the bedframe and it was absolutely filthy, the cloth was almost black.

I asked the Sister if probiotics would be useful for my father and she said she would refer him to the Nutritionists. When I chased this up with her on the 8th, she told me Dr C had said it was inappropriate. I could not find out what that meant so I brought my father in a probiotic drink daily.

Later that day and following a request from my father, Dr P telephoned me at home. He apologised for all the confusion over diagnosis. I explained that we understand that there can be problems in unusual cases but they must understand our concerns that two different departments are telling us two different things and my father is not actually being treated for anything at present. He explained that they have all met together and looked again at all the test results, consulted colleagues at H and found x-rays of a similar appearance on international databases. We were now basically back to the original diagnosis made by the Respiratory doctors on 29th November, except now my father has contracted c.diff. They will now speak to the Doctors again at H to ask them if a Transoesophagul echo and an Angiogram should be undertaken.

7th December 2006: Consultant P visits and says the diagnosis is now Mitral Valve Prolapse and explains clearly why they think the x-ray appearance is so unusual. Dr P is in discussion with Doctors at H. The waiting list for this surgery at H is 21 days and the Angiogram will be done in the intervening days, 10 to 15 days after 2 negative c.diff results. The Transoesophagul echo will be done at W on 14th December. My father is told he will stay at W hospital as an inpatient until the Valve surgery can be carried out at H. The Consultant explains to my father that they are also referring him to Urology as a Prostatic Serum Antigen test performed when my father was first admitted to hospital could indicate Prostate cancer. Nothing more has been heard about this.

The confusion over the criteria for not being infectious with c.diff then causes what I feel is an unnecessary delay in my father’s surgery, because of the Cardiologists lack of knowledge in this area. My father finished the treatment for c.diff on 16th December and he no longer had diarrhoea. 21 days from this date would have been 6th January 2007. The date my father has actually been given for his operation is the 5th February 2007.

8th December 2006: In the morning, on ward CCU in isolation, a nurse arrived and said ‘here’s your aspirin Mr P’. My father replied that he was not taking aspirin, it was not prescribed for him. The nurse then looked again at the drug chart and she had two patients drug charts interlocked. The aspirin she was trying to give my father was written up for another patient.

Whilst in isolation my father had to use a commode. He understands why but found it embarrassing and felt vulnerable. Although he could shut the door for privacy, most staff knocked before entering but did not wait for a reply. Some staff just walked in. I made him a polite sign that he could put on the door when using the commode then remove it when he had finished. The first time he used the sign, a staff member opened the door to enter his room and she commented on the sign saying what a good idea, but it didn’t occur to her that she had not actually respected my father’s wishes.

For 2 days after J visited the nurses started to clean the commode each time my father used it. From the 8th December this stops. My father tells me so I tell him he should just clean it himself. He is now upset that the nursing staff doesn’t really speak to him except to give medication or take observations, although they are pleasant when exchanges take place. We notice too that nobody apart from I (Sister) speaks much to us either, despite the friendliness shown to other visitors. We felt that this was due to our having contacted Infection Control.

Even though I have read the guidance to staff about observing patients rights not to be disturbed whilst eating there were at least three occasions when this did happen for non urgent reasons e.g. to take blood pressure. On these occasions my father asked if he could eat his meal before it went cold. There were occasions when a nurse came in and attached the blood pressure cuff to my fathers arm, left the room and never returned. My father eventually removed the cuff himself. Also my father told me that frequently he would remind a nurse about medication, or ask them to remove a urine bottle and they would say ‘I’ll get that now’ but then never returned and he would have to ask again.

11th December 2006: A Doctor tells my father that there is a possibility that they may be able to carry out the planned TOE the next day, the 12th, if my father is prepared to be starved from midnight onwards. The Doctor made it clear it was only a limited possibility and my father did not have to agree to this if he did not want to. The Doctor promised that he would know by late morning and if they could not fit my father in they would let him know straight away and get him a late breakfast. My father agreed to this.

12th December 2006: I phoned CCU ward at 2.30pm to see if the procedure had taken place. I was told ‘not yet’. I arrived on the ward at 3.15pm. My father was still being starved and he had not been given his antibiotic for c.diff due at 2.00pm. My father had been asking the nurses to find out what is happening, they say they are trying to find out. I spoke to the Sister who apologised for the late antibiotic and this was due to the nurse not being told at handover that my father was due to have it. He had been given his early morning dose. Then a nurse arrived to say she had been told not to give my father his 2.00pm dose as he was going for a procedure. I then realised that my father had also been given his diuretic that morning which meant he probably had very little fluid left in his body. I said I was concerned that he would become dehydrated if he were left without fluid for much longer. Eventually a nurse returned at 3.50pm to say that the procedure had been cancelled but because the doctors had been dealing with an emergency nobody had been able to find out that it had been cancelled. I asked the nurse if she could get my father a cup of tea and something to eat. She said she could get a cup of tea but nurses were not allowed to have the keys to access food any more. She offered to check the staff fridge to see if there was a sandwich, but there was nothing. I asked her what should I do, my father had missed two meals and needed to eat. She suggested I try the snack bar in the Atrium, as the restaurant does not open until 5.00pm. In the snack bar there was no food except cakes, the snack bar staff tell me to try the restaurant. They are open before 5.00pm but only have sandwiches and rolls on sale. I am able to buy a roll that my father would like and give it to him at 4.00pm.

15th December 2006: Sister (M) tells us that 3 negative results are required to be classed as c.diff negative, we tell her the Consultant said only 2 are required. M says it is 3 and asks my father to remind the nurses that that a sample is to be sent the next time he opens his bowels. A nurse returns to confirm that the last 2 samples have tested negative and a 3rd is needed but my father has not opened his bowels today so they could not send a sample off. My father tells her that he has opened his bowels twice already. The nurse says but that was when the night staff are on, the night staff cannot use the ‘pod’ to send samples to the lab as it is too noisy and disturbs patients. They can only use it for blood. I point out that my father has been kept in isolation for 10 days now and it is ridiculous if the only reason he cannot be moved out of isolation or transferred to H for his surgery is because he is opening his bowels at the wrong time of day. I speak to the House Officer (O) to ask what can be done to ensure a 3rd sample is sent off, he replies he will make sure it is done.

16th December 2006: When I visit I ask the Nurse if the 3rd sample has been sent off. She said no as the first bowel movement was too early and the second one coincided with handover and just as she got there the stool was being disposed of. I repeat the whole saga again to the nurse; my father tells her that he had reminded them a sample needed to be taken. This nurse says she will write a big note to remind nurses tomorrow.

17th December 2006: We are told today that a sample has not been sent because a certain number of days have to be left between testing each sample. We are assured again that a sample will definitely be taken tomorrow.

18th December 2006: The Consultant tells my father that Mr A from H will be visiting my father the next day to meet him and give him a date for surgery, although it is unlikely to be before 10th January and a decision about an Angiogram. The Consultant also says as long as my father’s 3rd sample is negative for c.diff he can go home for Christmas. During my visit I ask the Sister (W) if the 3rd sample has been sent off. She checks the notes and says no it hasn’t. This Sister says that the criterion is only one negative sample is required. My father and I explain the whole situation again and that we are being told three different things now. The Sister replies she knows about Infection Control. I told her that this is the fourth day that a sample should have been sent off, we were doing exactly as the staff had asked, reminding them to send off samples, what more could we do? My father even said he had been trying to hold off going to the toilet to accommodate the ward rules about using the ‘pod’ too early. W asked ‘What do you want me to do?’ I replied I want you all to do what you should be doing and what you say you are going to do, I want someone to do their job properly. She said she would speak to the nurse looking after my father that morning, who has now gone to H. W returned to say she has now spoken to the nurse and the nurse says that she did send off the sample although it is not written up in the notes.

19th December 2006: Mr A from H visits my father and tells him he will be unable to operate before Christmas but does not give him a date. Dr C tells my father that the 3rd sample is positive for c.diff so he cannot go home for Christmas.

20th December 2006: I called Infection Control again, as I was concerned about the continuing lack of hot water. There was also confusion amongst the staff over what the criteria is for being classified as negative c.diff. (On 7th December the Consultant says 2 negative stool samples are required, on 15th December a Sister says 3 negative stool samples are required, on 18th December another Sister says only 1 negative sample is required.) I spoke to L in Infection Control; La informs her that the cold water problem is ‘sorted’. I tell her it is not, there is warm water in the taps most mornings before a certain time but then it is freezing cold for the next 24 hrs. L says she will get in touch with ‘Estates’ and ask J to call me about the water and the number of negative samples required for my father to be classed as c.diff negative. This is important as we were told by my father’s Consultant on 7th December that H Hospital may not accept a patient for surgery whilst they are testing positive for c.diff, and that my father could go home for Christmas if he is c.diff negative.

On arriving in the ward I am told by the Sister that the water problem is being dealt with at a ‘management level’. The Sister says that if there is no hot water in the tap my father has to ask one of the nurses to get him some in a bowl. J visits and informs us that the criteria for being negative c.diff is to have no symptoms i.e. once the diarrhoea has stopped. It is nothing to do with a certain number of negative samples. J says she is putting a note in my father’s notes for the Microbiologists to speak to my father’s Medical Team to educate them on this point. J runs the tap and the water is still freezing cold. She will chase this up again. I ask J if it is acceptable that my father has a small plastic bowl in which he has to shave and wash his whole body. J tells my father he must wash from top to toe using one disposable cloth for each different part of his body. I explain to J that all the staff seem to be unaware of how to manage patients with c.diff from management of the environment to hygiene issues. The Consultant and Doctors generally do not wash their hands, they use alcohol gel only and this is not effective against c.diff spores. We ask for and get a bowl of hot water to help my father wash his hair. He has been unable to do this since the 5th December.

21st December 2006: (think) there are workmen on the ward looking at the plumbing. One of the workmen tells the sister they are there because ‘a family has complained that there is no hot water’. They wander in to my father’s room to turn on the taps; no gloves, no aprons, no hygiene knowledge at all. They are not stopped or spoken to by the nurses or Sister. I explain to them what they have to do and they oblige. (The aprons unfortunately do not fit one of the larger men so he could easily have contaminated his own clothes with c.diff spores.) One of the workmen explains the problem with the hot water has been resolved, he explained it was because of cold water ‘feeding back’. My father is able to get warm water for the next few days, then it becomes intermittent again.

21st December 2006: the Consultant tells my father that as his stools are semi-formed it is better if he stays in hospital over Christmas. When I arrived on the ward I asked a nurse about the difference between diarrhoea and semi-formed stools. I explained that Infection Control/Microbiology say that if my dad does not have diarrhoea he is classed as c.diff negative. She said that it is better if my dad stays in hospital because he will be ‘out of the system’ if he goes home for Christmas. I said that if there is a clinical or medical reason for my father to remain in hospital then that was fine. To keep him as an inpatient or not let him go home for a day or two at Christmas because the ‘system’ is not flexible enough is completely unacceptable. She said she would look in the notes to see if the Microbiologists had now spoken to the Cardiologists but she said it is not clear. She suggested I wait to see a Doctor as they will be ‘up soon’. At 5.00pm the nurse had left the ward so I asked the House Officer if a doctor was coming but he said not to bother waiting as they would not be coming back up on to the ward. He told me to return at 11.00am the next day.

22nd December 2006: I returned to the hospital at 11.00am. Dr P said my father is well enough to go home, but if he goes home he will then go onto an outpatient waiting list and will have to wait 6 weeks longer for his operation. My father was worried about having to wait longer for his operation but he also told Dr P that nobody asks him about his mental state. Being in total isolation was taking its toll. It seems my father is being kept in hospital and in isolation because the waiting lists are not flexible. I explained that the Consultant had said on the 7th December that there was a waiting list of 21 days and that the Angiogram would be done in the meantime. Dr P said that my father has been referred but we have to wait for a date from Mr A. Because of the lack of awareness of infection control generally amongst the staff I had some concerns over my father being put back on the ward. We also had concerns over the fact that my mother was at home recovering from heart surgery herself, and was awaiting further surgery, as she is unable to walk. Taking all this into consideration we agreed that my father would come home on Christmas Eve and return to the hospital on Boxing Day.

2nd January 2006: The Doctors tell my father that because of the Christmas/New Year period nothing will be happening this week regarding the referral to H.

4th January 2007: My father is told he is being moved out of isolation onto ward CCU as another patient on CCU has c.diff and they need the room. My father and I start to decontaminate all his possessions with the surface wipes given to us by infection control. Two nurses start to move the bed that my dad has been using in isolation whilst symptomatic. I ask them if they are going to decontaminate the bed according to the guidelines before moving it onto the ward as it could be covered in c.diff spores. One says ‘what spores’, the other says ‘it will only be your father who is using this bed’. I explain what I have learned about c.diff including what spores are, that the spores can live for months on surfaces, how they can be transferred, that they can only be removed properly with a bleach or chlorine based cleaner and they ask me what I want them to do. I ask them what the policy is. They say they don’t usually clean beds. I tell them in the interest of the other patients and according to government guidelines they should replace all the bedding linen and wipe down all surfaces of the bedframe, mattress and pillows with an appropriate cleaner. I also add that the guidelines say everything in the whole environment should be thoroughly cleaned. One nurse (possibly charge nurse) says they only use ‘Saniclo’ (not sure if correct spelling). I say that means nothing to me, he should check it is appropriate against c.diff spores. He repeats ‘We use Saniclo’, again I say I don’t know anything about brands, he repeats ‘We use Saniclo’. I ask him to stop repeating the same sentence it is not getting us anywhere. One of the other nurses says we are happy to do whatever you want, just tell us what to do. I say its nothing to do with what I want, its what you are supposed to do, but if you’re asking my advice I would wipe down the mattress, pillows, every surface of the bedframe and replace the linen. They do not attempt to contact anyone (e.g. a lead Manager in decontamination). The bed then gets cleaned. I have no way of knowing whether it was an appropriate cleaner or not. On CCU ward in the new bed space, a syringe pump has been left on the patient table and the surface of the table has obviously not been cleaned. I clean it myself because now the atmosphere is not very nice. On washing my hands at the ward sink by the windows on CCU, I am told by a nurse ‘you won’t get any hot water from that tap.’ At this point I despair.

5th January 2007: I called J to report the incident about environmental decontamination. J said she would take cleaning issues up with G. I also reported to J that my sister had witnessed the House Officer drop a glove on the floor, then pick it up and continue to use it. I also told her that it worried me that the Consultant and Doctors seem to think alcohol rub is effective against c.diff.

6th January 2007: My father is told that they are trying to get the Angiogram organised at H as quickly as possible as he has been waiting such a long time. However, as they are going to try and fit him in on a cancellation, from tomorrow 7th, my father will be starved from midnight on the off chance that H can fit him in on the 8th. He is told this will happen daily until the Angiogram can be done.

8th January 2007: My father’s Angiogram takes place at H. He is given a date for surgery of 5th February 2007.

9th January 2007: Despite being told that my father will be remaining in hospital until he is transferred to H for his main surgery, my father is now told he may be able to go home tomorrow. We are not told the reason why this has now changed. Then my father is told he can go home today. On this occasion the Sister ensures we have all the information we need for my father’s care regarding his health whilst at home, she gives us the names of people who should be contacting my father and phone numbers for us in case they don’t call.

We were given a copy of the Pharmacy ETTA that had been sent to my father’s GP. I noticed that under Admission Details the following sentence was written ‘Mr P remained well through out his admission’. This was not true; there was no mention at all of Clostridium Difficile on this summary or the treatment he had for it. I called CCU the next day and spoke to the Sister. She said she had noticed this too. I said it was vital my father’s GP was aware he had contracted c.diff whilst in hospital. She said she was not sure if she could amend this on the ‘system’ but not to worry, as she would ask a Doctor to phone my father’s GP. I said I wanted it put in writing, she repeated she would try and if she were able to do this then she would send a copy of it through the post to my father. This specific issue concerning my dad’s care is so shocking that it was put in a question to the Health Minister in a debate in the House of Commons on 16th January. We have now received a copy of the amended report but this may not have been done without my intervention.

The following points about car parking and ward entry may seem trivial in comparison to health issues, but a lot of time and money was wasted trying to sort these things out when we could have been spending time with my father. When you have a relative in hospital you really do not need to have these extra worries and expenses.

Whilst I was on the telephone to Infection Control on 6th December 2006, one of the receptionists overheard the conversation and I had a subsequent discussion with her which included the subject of car parking. She said she would find out about a concessionary parking scheme for visitors of longer term patients i.e. more than 10 days. She later gave me a NHS form to complete which entitled one carer per patient to park at a reduced rate. I bought a strip of 5 (minimum) scratchcards costing £7.50, which works out at £1.50 per day. The rate for 1 hours parking in the main car park is £1.20. (The average hourly rate for hospital visitor parking in England is 83p per hour). Visiting on the Critical Care Unit does not start until 3.00pm. The scratchcard does not have to be displayed after 4.00pm. Therefore it is cheaper to park for one hour in main car park than the system described as concessionary. This is not clear until you have purchased the cards. When I first purchased these cards I was given a map of the hospital on which the Ecovert employee drew directions to where one parks with these scratchcards. I clarified verbally where he had instructed me to go and he confirmed it was the entrance to the housing estate further down the T Road. I drove around for ages the next day trying to find this parking but could not. I tried this for a couple of days but was wasting too much time so went back to the Ecovert Office to ask for my money back. They refused. Another lady was there having similar problems so we asked to speak to the Manager. The Manager walked across the car park with us, at my request, to show us exactly where to park. It was near the Occupational Health offices, not in a private estate down the road. He waived the fee I would have paid that day in the main car park and apologised for the confusion. He also agreed that the map was unclear and they would have another look at it. I have since discovered that this parking concession is the staff parking scheme. I have also discovered that the cost of these scratchcards to staff depends on earnings. I would like to know how and why somebody has decided that carers of long-term inpatients have to pay the equivalent highest rate of somebody earning more than £50,000 per year. Having been told that my father would remain in hospital until his surgery I continued to purchase these cards because if we were visiting for more than one hour it was beneficial. When my father was suddenly discharged I have paid for parking which I will not use. Ecovert say they do not give refunds.

I would also like to bring to your attention what is happening with regard to entry on to the ward via the intercom system. I assume this is there for a valid reason including vulnerable patients leaving the wards, and inappropriate persons gaining access to the ward. On arriving at Critical Care there is a button to press and the person sitting at Reception releases the lock on the door so you can enter. On lots of occasions when there was nobody at reception, the door was held open by a piece of card stuck underneath the door or a fire extinguisher against the door. On some occasions a cleaner or other employee would come along and use their swipe card to get in and I just walked in behind them. I noticed a sign on the door saying if reception was unmanned to call a phone number, however there is no phone or intercom system there. I asked the receptionist about this one day and she said I could use a mobile phone to call the number, I told her I did not have a mobile phone. She said the best thing would be to go back down stairs to the main reception and phone from there. I said if I am downstairs, what would be the point of opening the door to me upstairs? She suggested I say on the phone to let me in in 5 minutes then go back upstairs to the ward and wait. Is this acceptable?

There are policies and guidelines in place to prevent all of the above things causing harm, distress and unnecessary worry to patients. The written policies are in place but the staff on the ground are either not aware of them or not carrying them out. All the written policies in the world will not make a difference unless someone actually acts on them. Having looked at the results of the Inpatient Survey for 2005 at W not much has changed.

You should not have screens all over the hospital telling people that timely patient centred care to meet individual needs, services planned around the patient, dignity and the wellbeing of the patient are a priority when clearly they are not. Everything that happened to my father was dependent on the system, the staff use that phrase quite a lot. Very little attention was paid to his individual need for dignity, including privacy and access to the basics like hot water and food.

With regard to infection control issues I should like to make some suggestions. Aside from the staff, not enough is being done to educate patients and visitors about preventing the spread of infection. Someone needs to be responsible for removing all literature from your hospital saying alcohol rubs should be used to prevent the spread of infection – it is well known that they are not effective against c.diff. The message should surely be that alcohol rubs should be used in conjunction with handwashing. I was in the x-ray department on 19th January; a poster on the wall contained the sentence ‘It only takes 30 seconds to wipe out bugs with disinfectant handrubs’. This is not true for c.diff. The t.v. screen displayed information saying ‘Always wash your hands – or use the alcohol rub’. The word ‘or’ should be replaced with ‘and’. These are just two things I happened to see during a 30 minute visit. Why have these not been updated with the correct information, peoples lives depend on it? Why not have a message on the rub dispensers saying hands must be washed thoroughly first?

You have large information boards in the Atrium. Why not have one dedicated to ‘Hospital Bugs – how to help yourself’. Specific, relevant and up to date information should be available. People should be aware of what they need to do before they catch these bugs as well as after. Tell it like it is, be open and honest in the leaflets.

I have read in your policy documents that you encourage patients to ask staff if they have washed their hands. I would like to know how you do this because I saw no evidence of it.

People who are confined to bed cannot wash their hands through choice. In over six weeks in your hospital I never once saw a nurse bring a bowl of water to a bedside for handwashing to take place before eating. It is clear that the staff cannot be relied upon to do this so it may help if you have information embossed on the food trays to prompt patients to ask. Staff who serve the meals could be trained to serve each meal with the sentence ‘Don’t forget to wash your hands’. Biscuits and cakes are routinely served with cups of tea encouraging patients to eat with their hands, should this practice continue in light of the risks?

We have a family member with a severe nut allergy. His life depends on us being vigilant and educating others on cross contamination. For some reason people do find this issue difficult to understand. Not enough is being done to educate people in this area. For instance; if a person has c.diff spores on their hands, they might follow all the correct advice in good faith, but if they use their hands to turn the tap on they will simply pick up the spores again when they turn the tap off, then they contaminate the door handle etc. etc. I have yet to see a visitor using their elbow to operate the taps. In a hospital building that is less than 3 years old surely you should have automatic taps, these are becoming standard across European countries.

There must be lots of things that can be done within the environment to minimise human error and omission. I trust you have taken up the option to apply for the additional capital of £300,000 outlined in the letter of 7th December from the Chief Medical Officer. This letter also reminded you of your duty to have a specific policy on the prevention and control of C. difficile infections. However we have identified that you are failing in your duty to ensure that these are effectively implemented. I would be interested to know how this money will be used to help control HCAI in our local hospital.

The questions I would specifically like answered are as follows:

1. Why was my father’s intravenous line not removed until we raised the issue, putting him at risk of infection?
2. Why did it take so long for the Cardiology and Respiratory teams to meet up once it was clear there was a disagreement?
3. Why were we not given any information about Clostridium Difficile as soon as my father showed symptoms, given that he was in the high-risk group of age, underlying illness and had been on antibiotics?
4. Was a Root Cause Analysis undertaken to find out where my father had contracted c.diff, if so what was the result of this?
5. Why was my father not isolated as soon as c.diff was suspected and allowed to continue sharing ward facilities putting other patients, visitors and Healthcare workers at risk?
6. Why did we have to ask what the name of the ‘bug’ was and were only given a leaflet when we asked?
7. Why were there cases of mistaken patient identity?
8. Is it acceptable for anyone, especially pensioners in isolation for a month, to have to pay £3 per day to watch television in hospital?
9. Why was there not a normal supply of hot water on the ward? Why was this just accepted as normal by the staff?
10. Even after the lack of hot water was reported to Infection Control and Facilities, why was it left to visitors to chase this up and then again report that the problem had not been solved after all?
11. Why did it take approximately 18 hours for antibiotic therapy to be commenced once Clostridium Difficile had been confirmed positive?
12. Why did the information on the door of the isolation room differ from that given to us by staff?
13. Why had the isolation room not been cleaned prior to my father being admitted?
14. Why did the staff not notice that a big red bag full of dirty linen had been left in the room and only removed it when asked?
15. Why did it take a visitor to point out that the C.diff leaflet did not explain how the bacteria is spread i.e. the faecal-oral route?
16. Why did the staff not remove the ‘sharps’ bucket until they were asked?
17. Why did the nursing staff not clean the commode properly until they were told to by Infection Control and why did this only happen for the next 2 days?
18. Why was the bedframe that my father was using so dirty?
19. Why are probiotics not used as part of the treatment for c.diff?
20. Why has my father not heard from Urology, particularly as it is suspected cancer?
21. Why did 3 different senior members of staff not know what the criteria are for classification of being negative c.diff? When it became clear there was confusion, why was it left to a visitor to contact Infection Control for clarification?
22. How is it possible for a nurse to give my father the wrong medication?
23. Why was my father’s privacy not respected particularly when using the commode?
24. Why were we treated differently to other visitors after we had involved Infection Control?
25. Why did my father have to ask if he could finish meals and not be interrupted by non-urgent matters?
26. Why could the staff not find out that the TOE had been cancelled and why was my father not provided with something to eat after being starved for so long and so unnecessarily?
27. Why was my father put through four days of stress of being responsible for the nurses sending a 3rd sample off to be tested when this was unnecessary anyway?
28. Why did the nurses not ensure my father had proper facilities to wash in, is a plastic bowl and disposable cloths acceptable for a month for someone who is mobile?
29. Why did a visitor have to explain to workmen about hygiene issues?
30. Why were we told that my father was being kept in hospital, even though he was well enough to go home, due to the waiting list system?
31. Why were staff unaware of decontamination procedures when moving my father back onto the ward, again putting everyone on that ward at risk. Why did they not contact the Lead Manager to find out and why was it left to a visitor to explain the procedure?
32. Why do senior staff members think that alcohol is effective against c.diff?
33. Why was my father not given a proper date for his Angiogram and was told he would have to be starved on a daily basis until H could fit him in on a cancellation?
34. Why was my father told there is a 21 day waiting list for surgery and then had to wait much longer than this?
35. Why was a statement made on the Pharmacy ETTA that was completely untrue - why was there no mention of Clostridium difficile on the discharge details sent to the GP?
36. Why did nobody tell us automatically that there was a concessionary parking scheme once you have been a patient for 10 days? Why was it so difficult to access?
37. How and why has a decision been reached that carers of very sick people who are long term inpatients should pay a parking rate equivalent to that of somebody earning £50,000 per year i.e. £1.50 per day? Why do you have to buy cards that you may not use because your relative either dies or gets discharged and no refunds are available?
38. Why is there a notice at the entrance to CCU telling people to call a number if the reception desk is unmanned but there is nothing there to call that number with?
39. Why is there incorrect information still being displayed in the hospital that implies handrubs are effective against infections, when they are not effective against the most prevalent one i.e. c.diff?

I should make you aware that part of the content of this letter has already been raised in a debate in the House of Commons held on January 16th. I will be forwarding copies of this letter and your reply to my MP A K, to Da B, the MP that raised the question in the House and to A B, the Minister for Health, with names, where mentioned, deleted. I will also copy the Healthcare Commission whose duty it is to investigate where there have been failings identified.

As I said before, I am motivated by a desire to prevent other families going through the horror of c.diff and its possible fatal outcome through a simple lack of awareness. I would like therefore to have answers to the questions I have raised and I would like to know what specific measures will be taken to ensure these things never happen again.

I understand you will reply within 20 working days and I would be happy to meet with you in the meantime to further clarify any of the points I have raised.

Yours sincerely

Well done for getting here!
Last edited by Annie on Sun Aug 19, 2007 8:56 pm, edited 1 time in total.

Annie

Postby Annie » Sun Aug 19, 2007 7:08 pm

The Public Enquiry Manager
National Patient Safety Agency
4 – 8 Maple Street
London W1T 5HD

12th February 2007

Dear Sirs

I am enclosing a copy of a letter of complaint sent to W Hospital. It is about the very serious concerns I have about the care and treatment of my father whilst he was an in patient. My local MP is supporting me.

I have tried to report these concerns to your new online reporting service, but have become confused as there are so many issues I have raised.

I understand that the specific points I have raised will be dealt with by the hospital, but I am determined that everything possible must be done to stop people suffering especially due to the inadequacies of the NHS in dealing with Health Care Associated Infections. It is obvious that this is a national problem or we would be seeing a decrease in the amount of cases being reported.

I would also draw your attention to the website set up to support those affected by the Clostridium difficile bacteria; www.cdiff-support.co.uk.. Perhaps an Agency such as yours could be more pro active in seeking out failures within the NHS rather than waiting for people to report them.

I would be interested to hear your comments.

Yours faithfully

Annie

Postby Annie » Sun Aug 19, 2007 7:10 pm

The Healthcare Commission
Finsbury Tower
103-105 Bunhill Row
London EC1Y 8TG

Dear

I am enclosing a copy of a letter of complaint I have sent to W Hospital. This is for your information.

After having read the findings and recommendations in your report following the terrible outbreaks of Clostridium difficile at Stoke Mandeville I have serious concerns that the lessons are not being learned quickly enough.

Although W Hospital is a building that is less than three years old, and on the surface looks clean, my family and myself witnessed and experienced situations, which clearly cannot be allowed to continue.

There has been much interest recently in this subject in the Media, as well as the House of Commons, due in part to the tireless efforts of a fantastic but small support group (www.cdiff-support.co.uk). This will not abate while families are seeing their loved ones die or suffer horribly. I would urge that although you do not take up individual complaints, The Healthcare Commission needs to look carefully at the lack of education and lack of measures being taken by hospitals to make a serious reduction in the number of cases of Clostridium difficile.

Yours sincerely

Annie

Postby Annie » Sun Aug 19, 2007 7:13 pm

Minister of State
Department of Health
House of Commons
Westminster
London SW1A 0AA

Dear

I am writing to you in your capacity as Health Minister.

My father was recently a patient at W Hospital and contracted Clostridium Difficile during his stay.

During the debate in the House on 16th January, D B MP raised my father’s case. In particular this related to the fact that there was no mention of c.diff on the discharge report to the GP. I have written a letter of complaint on my father’s behalf to the Chief Executive at W Hospital, and have enclosed a copy with the references to c.diff highlighted.

The lack of awareness of this bacterial infection amongst the staff, particularly medical but also the nursing staff, shocked me. Much more must be done to educate all healthcare workers, patients and visitors.

As suggested by Ann Widdecombe on 23rd January in the House ‘Its not rocket science’. She is right. There are simple, low cost, effective measures that can be taken right now to end people dying horrible deaths and suffering in a way that is truly undignified. It starts with education. How can people protect themselves whether they are patients, visitors or healthcare workers if they don’t have the knowledge?

In July 2006 the HPA Report (Clostridium Difficile - Findings and Recommendations from a Review of the Epidemiology and a Survey of Directors of Infection Prevention and Control in England) recommended that existing surveillance of c.diff and other information sources should be reviewed. Trusts currently only have to report cases of HCAI in the over 65 age group. This will not give the government a true picture in interpreting trends in incidence, distribution and clinical severity. Given c.diff is becoming such a massive problem surely we should make it mandatory for all health care sources to report all confirmed cases.

I would urge you and your colleagues to take action and put pressure on all Healthcare Executives to look at positive and innovative ways to tackle this problem. The policies are all in place, but the money is spent clearing up the aftermath, not preventing the problem in the first place.

Yours sincerely

Annie

Postby Annie » Sun Aug 19, 2007 7:16 pm

'name' MP
House of Commons
Westminster
London SW1A 0AA

Dear

As you are my local MP with an expressed interest in Health issues I would like to engage your support. My father was recently a patient at W Hospital and contracted Clostridium Difficile during his stay.

During the debate in the House on 16th January, D B MP raised my father’s case. In particular this related to the fact that there was no mention of c.diff on the discharge report to the GP. I have written a letter of complaint on my father’s behalf to the Chief Executive at W, and have enclosed a copy.

Amongst other things, I was really shocked about the lack of awareness about Clostridium Difficile amongst the staff, particularly medical but also the nursing staff. The Infection Control Dept, who were very helpful, could be doing much more to educate staff, patients and visitors. There is a website dedicated to those affected by c.diff who have been incredibly helpful and supportive; www.cdiff-support.co.uk.

In July 2006 the HPA Report (Clostridium Difficile - Findings and Recommendations from a Review of the Epidemiology and a Survey of Directors of Infection Prevention and Control in England) recommended that existing surveillance of c.diff and other information sources should be reviewed. Trusts currently only have to report cases of HCAI in the over 65 age group. This will not give the government a true picture in interpreting trends in incidence, distribution and severity. Given c.diff is becoming such a massive problem surely we should be asking to make it mandatory for all health care sources to report all confirmed cases. It would be helpful if all MP’s signed the Early Day Motion noted below.

Please could you also look at the local issue of car parking at W Hospital? The cost of parking at the hospital is scandalous. The only reason anyone parks at the hospital is because they are sick, or they are visiting someone who is sick. On most occasions you are at their mercy when it comes to how long you are in the hospital. When the national hourly rate for visitor parking is 83p in England, how can a hospital in I justify charging £1.20 per hour and then a further £1 for every hour. Even more worrying is that Disabled Badge holders have to pay the same rate as everyone else does. Often, disabled people cannot use public transport with ease, they have no option. (Especially on Christmas day when there is no public transport!)I was also amazed to find out that disabled carers who are on benefits and visiting someone in hospital could no longer reclaim travelling expenses from June 2006.

Please could you reply to me and let me if there is anything you can do to support me.

Yours sincerely

Annie

Postby Annie » Sun Aug 19, 2007 7:21 pm

J
Infection Control Nurse
W Hospital

20th February 2007

Dear J

I just wanted to write and say thank you for sending me the copy of the amended patient leaflet on Clostridium Difficile. I am very pleased that you were prepared to listen to my comments and action was taken.

I contacted you directly when my dad was in hospital and I felt that you were the only one who really listened to our concerns. You may know by now that I have sent in a formal letter of complaint about my dad’s care. I also think it is important to let people know when the level of care has been appreciated, as you also went out of your way to answer some queries I had even after my dad had been discharged. Thank you for that as well.

Since my dad has been discharged I have become involved with the c.diff support group and have learned lots more about this awful infection. As a relative of someone who was suffering we were not given enough information, this is also happening in hospitals up and down the country. There does not seem to be a national template for a c.diff patient leaflet and I don’t know if there is a system in place for the NHS to ask patients and their relatives about the information they would find helpful. I have some ideas about what would be useful and I wonder how I could take this forward. Amongst other things my ideas would also be to include information about when the patient is discharged home. Is this something you could take on board? I would be prepared to spend a considerable amount of time on this because it really could make a difference. Please let me know if you or anybody else within the hospital would be prepared to address this.

Kind regards.

Yours sincerely

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Postby Catherine M » Mon Aug 20, 2007 3:03 pm

This letter was sent to the Chief Exec of the hospital where my dad died. It was really to get the ball rolling. It was sent before we had the medical notes.

The Chief Executive
XXXXXX XXX Hospital
XXXX Road
XXX XXX
XXX XXX


Thursday X December 200X


Dear Sir

R M: date of birth XX XXXX 19XX

I am writing to you regarding my late husband, R M. After nearly 3 weeks in hospital he died in the early hours of Friday X December 200X. His final week was spent in the Critical Care Unit (CCU). He received fabulous care from many people in the CCU but I would particularly like to take this opportunity to thank formally R, R, H and S for their hard work.

R died as a result of complications following a splenectomy which took place on Thursday XX XXXXXX. R was 75 years old but extremely fit and his death came as a huge shock to me and to my family. I am writing to you in the hope that you will be able to provide me with as much information as possible as to the cause of R’s death. Just before R died, Dr F of the CCU told us that his bowel was “hugely infected” and she also said that the cause of the infection was Clostridium Difficile. If this was indeed the case, I should like to know specifically where this bug came from and what the hospital is doing in response.

You may also know that R’s death is the subject of a Coroner’s inquest and to that end I am copying this letter to the Coroner as part of the information we are submitting to him. My understanding is that the inquest will take several months to complete and, quite naturally, I would like to know more information concerning my husband’s death on timescales much shorter than this.

I look forward to hearing from you in the very near future.

Yours faithfully

Mrs M M

cc: Coroner’s Office

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Catherine M
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Postby Catherine M » Mon Aug 20, 2007 3:12 pm

This letter was sent to the Nursing Manager. It got a very satisfactory and detailed reply about the action they had taken.

Xrd XXXXXXX 200X


Mrs J X
Manager
Critical Care Unit
XXXXXXX XXXXXX Hospital
XXXXXX Road
XXXXXXXX
XXXX XXX


Dear J X

Staffing Issue in the Critical Care Unit

My father, R, was admitted to the Critical Care Unit from XXth XXXXXX to Xnd XXXXXX 200X. Although my father died, he received excellent care from the nurses and doctors. However, during his brief spell in HDU, there was one nurse who I feel was not working to an acceptable standard. This letter is written in a spirit of co-operation and from a desire for improvement. I believe there are training needs that the line manager of the nurse in question needs to address.

The nurse’s name was X. I do not remember her surname. She had dark hair. I believe she looked after my father on XXXXXXXX Xth XXXXXXXXX in HDU. Unlike all the other nurses I witnessed, X did not adhere to the CCU’s strict cross infection control procedures.

X had been sitting at a computer, both elbows on the desk, her hands cupping her chin. Her fingers were resting on her lips. My father asked for a mouth wash. X came over. She did not put on her colour-coded apron or plastic gloves. She did not wash her hands. She did not use alcohol gel. My mother and I exchanged glances as we watched her extract a red mouth wash tablet from a small bottle with her bare, unwashed hands and place it in a plastic cup. Her hygiene behaviour was completely sub-standard and needs tackling. We were not assertive enough to confront her at the time. Even though X was very kind to my father and gave us no reason to think that she would react unfavourably against us challenging her, we felt unable to confront her.

She also had a loud and abrasive manner, making puerile jokes, shouting across the ward to her colleagues. It appeared she was seeking attention in an infantile manner. My father winced whenever she yelled and shrieked across the room. It was inappropriate and unprofessional. I hope that her behaviour can be monitored and improved. I am not asking that all nurses should go about their business silently and in sombre mood. Some levity helps recovery and brings normality to tense situations. Indeed, during the two hours that my father took to die after stopping his medicines, the nurses in ITU were chatting and laughing together at their station. I really did not mind this. It felt like life carrying on around me. X behaviour was of a different type altogether: immature, brash and embarrassing, and wholly inappropriate for a hospital setting. Also, she was overtly critical of the consultants in front of us.

I very much hope that you will be able to take action on my comments, and bring this person’s standard of nursing up to the high quality I witnessed in the rest of the Unit.

Yours sincerely,

C
Daughter of R

R’S address:
XX XXXXXX Avenue
XXXXXXX
DoB XX.XX.XXXX

Annie

Postby Annie » Sat Feb 16, 2008 2:46 pm

I was unhappy with the response to my complaint from my hospital. I asked the Healthcare Commission for an Independent Review. Here is the letter I sent.

(In a letter dated 14th February 2008, the HCC upheld this complaint.)

Complaints Investigation Team
The Healthcare Commission
Freepost NAT 18958
Complaints Investigation Team
Manchester M1 9XZ

Dear Sir or Madam

Your ref:

Further to my previous letter to you dated 25th January 2007 concerning a complaint against W Hospital. I have now received their reply. Although I am pleased that some positive changes have happened, I am not satisfied with some aspects of their response to my complaint. I would advise you that the Minister for Health with responsibility for Infection Control, is supporting me in her capacity as my local MP with regard to this incident in her local hospital. I wish to progress this complaint to the second stage for the following reasons:

1. They have not followed the guidelines on handling complaints.

a. I hand delivered my letter to the hospital on 24th January 2007, I had to telephone them on 30th January as I had not received an acknowledgement of my letter within 2 working days. I then received an acknowledgement dated 30th January.
b. In their final response to my complaint, they said they received my letter on 29th January despite it being hand delivered on 24th January.
c. In my letter of 24th January I stated I expected a reply within 20 working days. The letter from them, dated 30th January, states the guidelines have extended the response deadline to 25 working days. They enclosed a leaflet to confirm this, but it was out of date and stated a 20 working day deadline.
d. In the guidelines it states that if the hospital feels it is unable to reply within the time scales they should give an expected date of reply. Despite two letters from them saying they needed extra time to reply, and a request from me dated 14th May, no expected date of reply was ever given to me.
e. I sent a letter dated 20th February to the Infection Control Department, I received no response to this letter except a reference was made to it in their response dated 4th June to my original complaint.
f. I sent a letter dated 14th May chasing an expected date of reply and asking some further questions, I have not received a response to this letter.
g. I received their formal response to my complaint on 14th June. The letter was dated 4th June. The envelope was postmarked 12th June.

2. Some of the questions have not been answered.

a. Question 9 - Why was there not a normal supply of hot water on the ward? Why was this just accepted as normal by the staff?
b. Question 10 - Even after the lack of hot water was reported to Infection Control and Facilities, why was it left to visitors to chase this up and then again report that the problem had not been solved after all?
c. Question 11 - Why did it take approximately 18 hours for antibiotic therapy to be commenced once c.diff had been confirmed positive?
d. Question 30 - Why were we told that my father was being kept in hospital, even though he was well enough to go home, due to the waiting list system? The question is about keeping patients in hospital unnecessarily so that they can get the operation more quickly. My father was told if he went home, which he was well enough to do, he would go onto a different waiting list and have to wait 6 weeks longer for his operation. As soon as he got the date for his operation, he was discharged home and not directly to H hospital as he had been told all along. Chief Executive has not answered this point at all. Exactly how will a ‘discharge lounge’ help this situation. I have serious concerns on this issue. (I understand you will not be able to investigate the following situation but the same thing happened to my mother when she was kept as an inpatient for two weeks in October 2006 whilst waiting to be transferred to the B Hospital. She was not being treated for anything and kept asking if she could be discharged while she was waiting. She kept being told that she couldn’t, then suddenly they asked her if she would like to go home for the weekend.)
e. Question 36 - Why did nobody tell us automatically that there was a concessionary parking scheme once you have been a patient for 10 days? Why was it so difficult to access?
f. Question 37 - How and why has a decision been reached that carers of very sick people who are long term inpatients should pay a parking rate equivalent to that of somebody earning £50,000 per year i.e. £1.50 per day? Why do you have to buy cards that you may not use because your relative either dies or gets discharged and no refunds are available?

3. Some of the questions have not been answered satisfactorily.
a. Question 2 – From 30th November it was clear, to us, that the Cardiologists did not agree with the diagnosis made by the Respiratory doctors. The Respiratory doctors stated that my father’s symptoms were due to a cardiac problem and there were no indicators that the fluid on the lungs was due to infection. Despite our assurances that we understood that diagnosis is difficult when the presentation of symptoms is unusual, the Cardiac doctors kept insisting that they knew what was wrong and that it was a respiratory problem. They did not admit to us that there was a disagreement until 5th December during a chance conversation with a doctor in the corridor. During this conversation I suggested that expertise from outside the hospital should be sought if my father’s symptoms were so unusual. Then the next day, 6th December, a doctor called me at home to say that it was indeed a cardiac problem. So, from 30th November to 5th December two different sets of doctors were telling us that they knew what was wrong with my father, the problem was that they were both telling us different things. This question has not been answered because the question was ‘Why did it take so long for the Cardiology and Respiratory teams to meet up once it was clear there was a disagreement?
b. Question 13 – Procedure for cleaning the room broke down. What is the outcome of the review of this procedure?
c. Question 23 – Privacy was not respected. We would fully accept that concerns for safety override concerns for privacy but that is irrelevant in my father’s case. It still happened that that some staff did not knock before entering. I was shocked to hear that patients in isolation should be checked on every 15 minutes. This simply did not happen. Are records kept? Aside from his medical condition, one of the things that most concerned my father was the lack of human contact and loneliness before visiting was allowed at 3.00pm. Not enough attention is paid to the mental or depressing effects of being in total isolation, for week after week, particularly with no hot water. This whole experience had an incredibly draining effect on my father.
d. Question 24 – We were treated differently to other visitors after we had involved Infection Control. It is disgraceful that the Chief Executive accepts that staff can treat people differently after raising issues of concern, despite all the material published saying that this will not happen. It does not matter what you teach staff if a good example is not set by those in management positions. We were perfectly justified in every instance that we questioned staff, there is an apology in the letter for each instance. We were never rude in our dealings with staff, yet they felt that they could ignore my father and us. This is completely unacceptable.
e. Question 25 - Interrupted mealtimes. The interruptions my father experienced were all for non-urgent matters.
f. Question 26 – Procedure had been cancelled but no one told my father. We understand and accept that procedures are cancelled due to unforeseen emergencies. That is not a problem. The Chief Executive has not answered the question as to why nobody could find out that it had been cancelled and my father had been left starving until 4.00pm. Chief Executive states staff have been reminded that they can access snack boxes from the kitchen. Was this facility available at that time, if it was then the point about the condemned fridge is irrelevant.
g. Questions 33 and 34 – I fully accept the answer that the waiting list at H was out of the control of the doctors at W. This does not explain why the doctors at W initially told us confidently what the waiting time was down to the exact amount of days. Then my dad just kept getting put off, being told different things, with weeks going by, in isolation. On 7th December the consultant told my father that he has to stay in hospital until the surgery is carried out. On 21st December he was told by a doctor he was well enough to go home but then would have to wait 6 weeks longer for his heart surgery. On 9th January he is discharged from hospital to await his surgery at H. Once my father was clear of the C.diff infection on the 16th December, nothing changed in his condition between then and his discharge home on the 9th January. Why was he kept in hospital?

4. There have been instances where basic procedures were not followed resulting in errors, some very serious. Although they have apologised for these, I am concerned that these errors were not just happening to my father and that this is an indication of a far wider problem. How can so many mistakes happen to one patient on one ward during one admission. Were any of these incidents reported by staff?
a. Question 1 – IV line not removed. Chief Executive states staff have been reminded. My father’s veins were not ‘difficult to find’ so the response from the hospital is irrelevant. The line was put in on 24th November and was used until 29th November. It was not removed until we noticed it on 5th December. Was the date and time of the insertion of the line recorded in my father’s notes? If it was then how did the system fail?
b. Question 7 – Mistaken patient identity. Chief Executive states Ecovert (porters) and phlebotomist managers have been reminded.
c. Question 14 – Dirty linen from previous patient not removed. Chief Executive states staff have been reminded. Why was this not an indicator to staff that the room had not been cleaned properly?
d. Question 16 – Sharps box from previous patient not removed. Chief Executive states staff have been reminded.
e. Question 17 – Commode not being cleaned properly. Even after Infection Control ‘reminded’ staff it should be cleaned after each use, this only happened for 2 days. Chief Executive states staff have again been reminded.
f. Question 18 – Bedframe was dirty. Chief Executive states staff have been reminded. Purchasing separate deep cleaning equipment will not be appropriate where the patient has been infected with c.diff, the guidelines on terminal cleaning say that beds and equipment must be cleaned before they leave the room.
g. Question 20 – Doctor did not refer to Urology for suspected cancer. Chief Executive states doctor was warned to take more care.
h. Question 22 – Nurse tried to give my father someone else’s medication – Chief Executive states staff have been reminded.
i. Question 27 – Staff not sure of procedure for sending samples, my father is given responsibility. Chief Executive states staff have received additional training.
j. Question 29 – Maintenance staff unaware of Infection Control procedures. Chief Executive states staff have been reminded and will be further trained.
k. Question 31 – Terminal cleaning. Chief Executive states staff have been given refresher training.
l. Question 32 – Staff unaware of ineffectiveness of alcohol gel on C.diff. Chief Executive states additional training session was set up for staff.

5. I have subsequently had a meeting with the Director of Infection Control and still have some serious concerns that not enough is being done to prevent the spread of Clostridium difficile and even less is being done to prevent patients catching it in the first place.
a. Question 3 – I am pleased that a new sticker system has been introduced. However, since my father has been in hospital I have visited eight different departments and wards in the hospital and could not find the leaflets that the hospital say are displayed on the Infection Control notice boards. There were not any in the leaflet racks either. There were only posters on notice boards saying ‘wash your hands OR use the alcohol hand rubs’. The only leaflets I could find were in Reception, which contained reports on how well the hospital felt they were controlling MRSA.
b. Question 4 – It is clear from the time scales involved that my father contracted c.diff after he had been admitted to hospital. He contracted c.diff on a ward. Why is it not standard practice to investigate the possible cause or source of infection. Surely this is in the hospital’s, and the patients interests.
c. Question 5 – I don’t know what ‘source isolated’ means. A stool sample was sent on the 1st December when my father became symptomatic. He was told that it was positive for C.diff on the evening of 5th December. The guidelines recommend the isolation of all patients with diarrhoea pending diagnosis. My father was not isolated or given any specific information about handwashing during this time, whilst he was sharing toilet and bathroom facilities on the general ward. We all continued to use the hand rubs/gels, as this is what the posters say. We were not told that where there is a case of diarrhoea that this would not be sufficient.
d. Question 12 – We were given mixed messages by the staff and the posters. The information in the leaflet states there is no risk to visitors who are not on antibiotics. Given that proper cleaning is/was not being carried out, if we had not worn aprons we could easily have picked up c.diff spores on our clothes and returned home where we had two children both on antibiotics, one of them long term. If we hadn’t insisted on seeing this leaflet (which we had to ask for) we would not have known about the risk to someone on antibiotics. It is a small risk, but a risk nonetheless. Why leave this open to confusion. If the patient is the only person given the leaflet, it is up to them to share this with the family and visitors. Staff do not interrogate visitors to see if they are on antibiotics, or other medication that alters the gut flora.
e. Question 15 – I am following this up with Dr , Director of Infection Control, see enclosed letter dated 19th July.
f. Question 21 – Staff did not know criteria for c.diff negative classification. The response only confirms what I told the hospital. My father had been diagnosed with and treated for a very specific infection. Nobody on the ward caring for my father knew how to manage this infection. The two Sisters involved knew that we had been told different things but neither of them checked, they just both insisted that they were right.
g. Question 39 – Posters in the hospital imply handrubs are effective against infections when they are completely ineffective against c.diff. Chief Executive states that patient leaflet on C.diff states that soap and water must be used against c.diff and the source isolation signs say that hands must be washed. If the patient is not isolated and given a leaflet until a diagnosis is made, how do the public, visitors and indeed staff know this. My father was left for 4 days on the ward between onset of symptoms and diagnosis leading to being isolated. I have raised this issue with Infection Control.

Additionally, the points raised in Questions 9, 10, 11, 13, 14, 16, 17, 18, 27, 29, 31, 32 all have serious Infection Control implications.

I am also enclosing a copy of a newspaper report about a survey of staff at W Hospital, carried out by the Healthcare Commission, stating that 40% of staff had witnessed errors, near misses or incidents. I would like to know what measures are being taken to ensure that my local hospital is safe and that patients will not suffer or die from something that they did not go into this hospital with.

I look forward to your response.

Yours sincerely

Ian G
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Posts: 22
Joined: Fri Oct 12, 2007 9:00 pm

Postby Ian G » Sun Sep 21, 2008 10:39 am

I will upload our complaint report once all the legals are over. Look in my profile for an email link (once the 25 post rule has been achieved) or PM me

Julie112607
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Posts: 10
Joined: Sun Jan 15, 2017 10:54 am

Re: Guidelines on making a complaint

Postby Julie112607 » Sat Feb 11, 2017 9:11 am

I agree with all the point you have made.
There is no posters, leaflets etc & the mention of the name C.Diff is a no no - I have searched the internet on C.Diff in the U.K. & there is very little if any. The ward my father was on when he had a gallstone removed & back on his antibiotic drip. 2 days later contracted this foul smelling constant diarrhoea having to constantly ask the nurses to change him - I wouldn't mind but this smell was something so vile it lingers in your nose something you never forget. he was sent home no longer mobile, weighing just 5 stone still losing diarrhoea several times a day & on 625mg of antibiotics X3 a day - no appitite pains in his abdomen. No home visits from GP, nurse NO One!!
He died 10 days later at home.
Cause of death natural causes "pneumonia " we recently found out a guy in the next bed to my dad also died who was sent home before my dad. Then when a friend got admitted on the same ward in October she was put in a private room as she was told there were 13 cases of diarrhoea and there was a bed in the corridor that had been condemned!! I have not grieve for my father as I have been to angry at the no response to questions, complaints, emails, none returned calls 6 months on WHY!?
I know 100% the diarrhoea contributed to his death. You think by your father going in hospital he is going to get better after 8 weeks in there not to come home in that state what was his survival rates!? ZERO

graziella
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Posts: 520
Joined: Wed Apr 12, 2006 7:29 pm

Re: Guidelines on making a complaint

Postby graziella » Wed Feb 22, 2017 6:26 pm

Dear Julie

Firstly I must say how sorry I am to hear about the loss of your father, I know too well what you must be going through and in spite of the fact that it has been nearly twelve years since I lost my Grandmother it seems that in some hospitals things have not changed.

From what you have mentioned your father should not have been sent home in the condition he was in and for this alone you should most certainly be making a formal complaint. You should also be questioning why cdiff was not mentioned on the death certificate. I have noticed on another post you have mentioned how much they are trying to charge you. Yes hospitals do charge however not what you have told us. If you do need any help please do let me know as I would be more than happy to help in any way I can.

Graziella


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