Mr Owen I am grateful to serve under your chairmanship today.
Sickle Cell affects an estimated 12 – 15000 people in the UK and around 400 hundred in the West Midlands where my constituency is, with the associated condition, Thallassemia affecting around 1000 people, though hundreds of thousands more carry the traits for these conditions. The condition mainly but not exclusively affects the afro Caribbean community.
Sickle Cell is the most common genetically inherited condition in the UK. Roughly one baby every day is born in our country with the condition.
There is no known cure for the condition. The symptoms vary from relatively mild infrequent pain for some to much more serious episodes of crisis, frequent hospital admissions, strokes, organ damage and reduced life spans.
At the heart of debates about treatment for this condition lies one simple question: why is it, for all the progress that has been made -; and there has been progress -; that there is still such variability in the treatment for sufferers, leading to enormous and debilitating pain, avoidable and expensive hospital admissions and very damaging consequences for the families of those who suffer from Sickle Cell?
Some hospitals and some specialist care units do a fantastic job. But Sickle cell sufferers don’t want to see only islands of excellence. They want a system that is excellent and offers high quality integrated care that minimises hospital admissions, manages pain treatment and enhances quality of life wherever they live. The experience of patients as told to me and to others is that we are still a long way from having a system of excellence in the care of this condition, where the best is the norm.
I want to pay tribute to the work of the Wolverhampton Sickle Cell Care and Social Activity Centre based in Bilston in my constituency and to the other patient led groups around the country, to the Sickle Cell Society which is the national organisation speaking up for sufferers and to the work of the APPG for Sickle Cell and Thalassaemia, chaired by my Hon Friend the member for Hackney North and Stoke Newington.
Organisations like this are doing a tremendous job in explaining what this condition means for sufferers, calling for more attention on the condition, and pressing for better training for NHS staff and a more rounded way of providing treatment.
I have had extensive contact over the past seven years or so with the Wolverhampton Sickle Cell care group. The group provides hugely needed and valuable support for sufferers of the condition throughout the city and indeed beyond. This can be anything from helping patients deal with different agencies, helping their families through crises when they have to be admitted to hospital to a broader advocacy role locally.
While the group praises many NHS staff locally, the biggest and most consistent complaint they have is about lack of understanding of the condition among GPs, A&E staff and some other NHS staff leading to pain and delay for sufferers and bad consequences for their families.
They told me about Sharon, a single parent of two children under the age of 10 who has full Sickle Cell and is in frequent crisis. Every time she is admitted to hospital there is a desperate scramble to ensure care for the children among friends and relatives. There is no proper system in place to support her children. The stress on her and her family is enormous. It leads to her discharging herself early, often before proper treatment is complete because she has to look after the children and soon the whole pattern begins again. Is there not a better way to manage Sharon’s pain than frequent hospital admissions and incomplete treatment? And if she does have to be admitted, should there not be a better system of support for her children?
And they told me about the local man in his 40s who has gone for years without treatment for bleeding at the back of his eyes as a result of Sickle Cell and whose sight is now at risk when earlier treatment may have helped bring about a different outcome.
Or the patient I was told about by the Sickle Cell Society who was costing the NHS a fortune through repeated hospital admissions exacerbated by the fact that her children slept in the one bed in her flat and she didn’t have a bed. Buying her a bed made a huge difference. The cost of her hospital admissions could have paid for a hundred beds.
We will never reach a stage where no Sickle Cell patient has to be admitted to hospital but getting Sickle Cell care right has the potential to reduce hospital admissions making the condition easier to manage for the patient and saving the NHS a considerable amount of money,
The fact that the condition does not have a cure does not mean good professional care cannot make a difference.
This brings me to the national picture and the Peer Review of Specialist care carried out by the West Midland Quality Review Service and the UK Forum on Haemoglobin Disorders which was published last year.
This review visited 29 hospitals and reviewed the care provided. The aim of the care standards which have been developed is quite simple: That there should be Specialist Haemoglobinopathy teams based in hospitals backed up by a Local Haemoblobinopathy team. In other words the system should have both the expertise to offer the best care and be properly connected between primary and hospital care.
That is a good aim but the reality is much more varied and herein lies one of main causes of frustration for Sickle Cell sufferers and the organisations who speak out for them. The Peer Review process did find instances of excellent joined up practice. It found committed staff going the extra mile to deliver the best care. But it also found overstretch, patchiness, breakdowns in care pathways and an unacceptable degree of variability across the country.
- The report says: Cooperation between acute and community nursing teams was sometimes very good but this was not universal. The availability of social work and psychology support was variable.
- In many teams there were inadequate numbers of nursing staff for the number of patients, or in some cases no acute nurse specialist at all. Even where these posts were in place they often had a very high workload which included inappropriate tasks (such as routine manual or automated exchanges, filling in benefit forms) with very poor cover arrangements.
The peer review process also found that, particularly in non haematology parts of the system patients “perceived they were viewed as “second class” haematology patients”.
This point about how Sickle Cell patients view their own experience is critical point. Sickle Cell patients often feel they are treated either with a lack of understanding or even worse, sometimes with suspicion when they try to explain their condition or arrive at A&E in need of urgent pain relief. Lack of understanding can not only lead to poor care but to patients feeling they have not been treated with dignity and that their need for treatment is not respected.
I don’t need to remind the Minister that the very principle of the NHS means there should be no such thing as first class and second class patients. I don’t want to see anyone treated or feeling as though they have been treated as a second class citizen. The whole basis of the NHS, paid for collectively with treatment on the basis of need, is that everyone is a first class citizen. If there are sufferers of a genetically inherited condition who do not feel they are being treated as such that is not acceptable and something we should take very seriously indeed.
Another issue identified by the peer review is poor quality of data. This leaves us being unsure of the number of sufferers and unsure, beyond emergency admissions, about the resources devoted to treating the condition. How can we ensure the right treatment if we don’t know who the sufferers are or where they are? What is the Minister doing to improve these clearly identifiable data problems?
The Peer Review made a number of good recommendations about access to specialist care, staffing levels, training, psychological support and managing the transition between paediatric and adult care. These issues are absolutely central to experience of Sickle Cell patients.
Can the Minister tell the House, what is happening on these peer review recommendations? Will he undertake to go through them not in a general way but point by point, and give a progress report to the House? Such a report would be welcomed by sufferers and would ensure there was follow up on these important recommendations,
Then there is, for patients, the basic cost of living with the condition. Living with Sickle Cell is to live with pain and the need for pain relief. This means frequent prescriptions. For some patients the cost of these can be prohibitive. This is not just a matter of money but behaviour. If people do not use their pain relief efficiently because they can’t afford more this can affect their condition.
I appreciate the cost pressures on the NHS but would the Minister agree to commissioning an analysis from his Department to see whether free prescriptions for Sickle Cell sufferers would cost money or would in fact lead to net savings because it reduced hospital admissions?
And what of how care for Sickle Cell sufferers is to be delivered in the future? NHS England is currently responsible for commissioning care for rare diseases. But the review of how to commission care for Sickle Cell to be concluded in April next year has three possible models: continuing with national commissioning; co-commissioning with CCGs or leaving it all to CCGs.
Given that there is already concern about the large degree of variability in the quality of treatment, knowledge of the condition and priority given to it, Sickle Cell organisations fear a move to CCG only commissioning will exacerbate these problems.
Can the Minister ensure that the future way treatment is organised is in line with the aims of the peer review exercise ie dealing with the variability of treatment issue rather than making it more difficult? Again I repeat our aim should be a system which makes the best the norm rather than one which balkanises care and makes this more of a lottery depending on where you live.
To conclude Mr Chairman, Sickle Cell is an issue which deserves more attention than it has received and a greater priority in the delivery of high quality health care. The issue is less about knowing what the best care looks like and more about ensuring it is delivered to the highest standard throughout the country. This condition also requires some smart joined up thinking between agencies. Repeated hospital admissions because of a lack of a bed to sleep on at home is not a smart way to deal with a condition like Sickle Cell.
Sufferers have to put up with a life of pain but good treatment, the right information and the right lifestyle can make an enormous difference. That this treatment, information and help is so variable is not acceptable. Dignity and respect are essential for all NHS patients. That Sickle Cell patients feel they do not always get this is a concern for us all.
It is time we ensured the best care was available to all sufferers, delivered by a system which understands the condition and fully respects the patient and which allows sufferers to live as full lives as possible.
I hope the Minister can respond to the issues I have raised today in a way that makes that more likely, and where he does not have the answers, goes back to the Department and presses the officials to make sure the changes we know we need are made to happen.