World Sickle Cell Awareness Day Special: Picker meets John James; chief executive of the Sickle Cell Society
To mark World Sickle Cell Awareness Day (Thursday June 19th) John James, chief executive of the Sickle Cell Society (SCS); the UK’s only charity focused on driving general awareness of the disorder and funding for Sickle Cell patient service improvement, sits down with us to discuss the reality of Sickle Cell patient experience and the impact of awareness in care quality.
Thursday June 19th is World Sickle Cell Awareness Day, and despite the fact that the Sickle Cell Disorder (SCD) has been medically recognised for over 100 years, the awareness activity remains as important as ever, why do you think this is?
It remains important for a number of reasons, first the health and social care system is not fully appraised of SCD and its impact – some health and social care professionals are, and do fantastic work, it is important to acknowledge that. Evidence from patients and carers, particularly those who have to go to A&E for crisis management, and deal with temporary or agency staff who are unfamiliar with SCD shows that lack of awareness and understanding of sickle cell remains a significant challenge. This needs to change.
Secondly, there is a wider societal problem. There are still people who are not aware of what SCD actually is, there are still common misconceptions that sickle cell is a cancer or like HIV which of course it is not, it’s a genetic blood disorder. Instead of having round, regular red blood cells, they develop abnormally into a crescent or “sickle” shape. In a nut shell this means that the crescent shaped cells clog sections of blood vessels, and stop oxygen from reaching all of the body’s organs in the way it should. These blockages lead to episodes of pain- excruciating pain, known as a sickle cell crisis. They can last from a few minutes to several weeks, though on average most last five to seven days. They are unpredictable and have a significant impact on an individual’s quality of life. It’s a chronic, life-long condition and awareness and understanding of the condition needs to improve.
So put the two together and the whole picture demonstrates why awareness activity remains important particularly amongst professionals and the general public.
You have had a long career in health service management, what was it that appealed to you about working with the Sickle Cell Society (SCS) vs. other specific illness charities?
When I worked in the health service it was quite clear that SCD was not a priority compared to other long term conditions or even other blood conditions – in places like London, or other UK inner cities it is simply not taken seriously, particularly in relation to care and support outside hospital. I recall when I commissioned a new community based SCD service there was a degree of opposition as to whether it was necessary, despite evidence to the contrary. It was a struggle, however those same services are going strong today.
The inequality that besets SCD is in part what drew me to the organisation. The charity does great work and has enormous potential. However, the great inequities in the level of financial support the Society secures are a major challenge. When you think that the majority (70%) of the UK’s SCD population is in London, and the city’s record on providing high quality primary and community services for this disorder is not great, you see a disheartening picture. I think this pattern is also mirrored in other parts of the country.
Would you agree that lack of understanding of the condition- both general and clinical, is as much of an issue as lack of awareness at this point?
Definitely, without doubt. I can give you a recent example of a young man in his mid -20s, who had been going to his local hospital SCD specialist centre for many years, without problems and receiving good quality care. On the occasion that he had to go to A&E recently for a crisis late at night, his experience was appalling. He had to advise the professionals, on how to treat him. There was no SCD protocol in the department. This is not a question of blame but simply an example of the experience of someone living with this condition. His experience relates to a number of factors, one of which was the lack of understanding and awareness of agency or bank staff on duty that evening, the lack of an A&E SCD protocol (NICE standards exist for pain management and have done for some time). This in some way reinforces the points I made earlier in this interview about awareness and understanding.
More people suffer with SCD than cystic fibrosis for example yet there seems to be more general awareness of the disorder, why do you think this is?
It’s partly because the disorder has been marginalised. The fact is it is the country’s biggest genetic blood disorder. But it predominantly affects black people – race is therefore a factor. There is a definite level of ignorance causing marginalisation, around this disorder. This is one of the things we are trying hard to change.
We are also doing what we can to support more research and development. There has been a lot of very positive work in bone marrow transplant in relation to children. But if you are an adult there is no cure. In my opinion there needs to be more publicity based on research that will in turn help to develop public attitudes and elevate awareness.
On a cultural level there are also some myths and misinformation around SCD that needs to be addressed. The cultural myths and beliefs about the disorder, like it being something that affects evil people – witchcraft, or that it is catching, are just nonsense that is not credible. We need to do a lot of myth busting with some communities.
What impact do you think this lack of awareness/ understanding has on the quality of the healthcare experience for SCD patients their families and carers and those with the SCD Trait (carriers of the disease)?
To answer this question you just have to look at the evidence from recent peer review research as well as the recent focus group work we did with children and adults living with SCD with Picker. The peer review into children’s care and services, carried out in 2010 highlighted a variable quality of services across the county- basically a postcode lottery. To be honest despite these findings not much progress on improvement has been made.
Then in 2012/13 the adult peer review took place, and surprise, surprise, the report found similar variability in the quality of services for adults. Even more evidence to support the need for improvement in the consistency and quality of services. Commissioners must take action. Furthermore we don’t just need to, but we have to raise awareness if we are to really improve the quality of care and access to it available to people with SCD, and for their families carers and those with the trait.
It is important to acknowledge some progress over the years. However commissioners (NHS England and Clinical Commissioning Groups) need to be making more rapid progress to address the inequalities which persist for people living with SCD. NHS providers of services such as specialist centres and individual clinicians need to adhere to national guidance and standards from NICE and the Clinical Reference Group for Haemoglobinopathies that exist.
The SCS is pleased to support good quality research work like the work we are currently doing with Picker. I think good quality patient feedback can really help clinicians to understand the impact of the care they give, and to then make it clearer exactly what people’s experience of their care actually is. Don’t get me wrong, some people do get good, even exceptional care, but more get the reverse, and that needs to change.
What is your opinion of the healthcare services currently available for SCD patients and would you say that the quality standards in place make for a positive patient experience – or is there still work to be done?
The two recent peer reviews of services for children and adults show that over time, progress is being made- but it is painfully slow. There remains an enormous amount of work to do to improve the consistency and quality of services for people living with the condition. Part of our role is to ensure that SCD is on the agenda, period. It was not so long ago, that it just was not. But now it is about finding how we can make more RAPID progress, there is a need to and it should not be ignored.
Interestingly, the new commissioning arrangements show there is a distinct fracture line between NHS England central specialised commissioning and clinical commissioning groups. By this I mean that the specialist commissioning groups are for just that specialist services. This approach can provide an excuse for other more general commissioners to neglect commissioning the more localised care services for SCD. This has massive impact on the disorder community. It is a long term condition, which means that patients just have to live with it and manage as best they can. To live well within their local community, they need to be able to go to their local GP or surgery, and get the quality care that enables them to lead a normal life.
One of the issues with SCD by comparison to other long term conditions, is that outwardly you look well, but if you have a crisis you are literally in excruciating pain. Unless you scream and shout about it people just would not know. That is why specialist services and increased general awareness / understanding are so important. Patients need to know that there is that understanding and if they say they are in pain- even if they don’t look “ill” they can get the care they need quickly and effectively, not just at a specialist centre but in their own communities. When there is a fracture line it is the patients that fall in the cracks. This needs to be addressed.
What would an improved healthcare experience for SCD patients, look like through your eyes?
That the patients go through a seamless pathway from primary to specialist services, that they have a positive care experience and get a treatment that helps them to not only live longer with their condition, but with a better quality of life. For things to really improve patients need to be able to see that there is support available to them and that they are not alone in their condition.
How can SCD patients and their families be better engaged in their care?
This is where the SCS is so important. As an organisation we do a lot of engagement work. I also think that our work with Picker is another way to achieve this, one I welcome.
But there are others; peer support is vital. Patients, carers, families and clinicians all working together to support the patient and in turn each other. At the SCS we use and encourage this and offer services such as befriending, support via volunteers, regional care advisors, free patient education seminars and in recent years social media connections. Social media has allowed us to connect with the SCD community on a wider level and build an online community.
We also work with other charities. E.g. UK Thalassemia Society. Although thalassemia is a very different disorder, the healthcare service sometimes lumps sickle cell and thalassemia together as one.
Why is talking to SCD patients and conducting research like the project with Picker so important to improving patient experience?
It’s massively important, and about listening to what patients are telling the service and telling us. This is vital. If you look at the most recent NHS reforms, they clearly say “patients have to be at the centre of the care they receive.” That statement speaks for itself. But it can’t just be words for words sake, or marketing – it has to be enacted and carried through all parts of the system. That is what we are trying to do with the work with Picker. Through this research and the understanding of the responses given, we ensure that SCD patients have a voice in improving their care and the health service in general.
There is also great benefit for the NHS in general, not just the patients. Elevated awareness understanding and improved local and general services will mean less instances of A&E attendance from SCD patients’, in crisis and more informed and confident patients in general. When the right measures are put in place it is a win, win for all involved.
How do you think improved awareness and understanding would affect the quality of care available for these groups and why do you think this is?
It would raise the bar. If you accept my point that the peer reviews demonstrate variability, that there are good services available they just aren’t consistently so, and there are those that are lagging behind, then we need to improve the current situation and strive to achieve a level playing field.
What have the SCS got planned for World Awareness Day?
We have a few things planned to elevate awareness in three key areas. Firstly, for the general awareness we have our celebration event, both for World Awareness Day and as a charity, it is our 35th anniversary. It’s a chance for us to connect with our supporters, the wider SCD community and the general public. This event is taking place on Wednesday 18th June at Brent Civic Centre opposite Wembley national Stadium.
Secondly, we are working with the All Party Parliamentary Group for Sickle Cell and Thalassaemia we are planning to hold an event for Parliamentarians and other stakeholders on Monday 16th June.Finally we have other smaller events in which we will be participating.
Finally, what can your average person do to support a patient with SCD?
From a general awareness perspective there are the obvious things like befriending an SCD patient and just showing you care. You would be amazed how much difference that can make.
But from a position as chief executive of the UK’s only SCD focused charity, what they can do is help the society. We exist by donations – we are not government funded. Without donations and public support we would not exist, or be able to continue to fund our fantastic team, so they can continue the work achieved in our mission so far. Part of awareness is helping us to raise funds and improve services for SCD patients, their families and carers across the country.