How can Sickle Cell Disease patients be better engaged in their care?
You have been actively involved in SCD research during your clinical career, what initially peaked your interest about this disorder specifically?
As a paediatrician I have come across SCD at all stages of my career, but my research interest developed about 10 years ago, when I was working in Southampton with Professor Fenella Kirkham who is a paediatric neurologist. Her research has over the last 8 years focussed on risks of stroke in Sickle Cell Disorder patients.
At the time she was beginning to see a pattern where underlying respiratory disease was a key issue in this area. She asked me to get involved and assess the various components of respiratory problems that are common in children with SCD and that most importantly make it worse. Since returning to London and taking my post at St Mary’s Hospital, in North West London, where there is a big SCD community, my interest has become more pronounced. I have also become involved with the CLAHRC programme, which is specifically focused on health service delivery and how it can be best improved for the benefits of all patients. During this time it has become clear that if we are to improve care delivery we have to put our understanding of respiratory conditions into action.
In the past children with SCD have just been sent to hospital for any and every ailment, which has meant that A&E attendances and hospital admissions have increased considerably, many are totally unnecessary. Patients with minor problems could be treated perfectly well in the community, but they just aren’t.
This is one of the key reasons that we are currently developing a Patient Reported Experience Measure (PREM) with Picker, a tool that will be used to monitor SCD patient experience and to find out exactly what their care needs are and whether they are being met. From there we can work out exactly how they can be improved.
What is your opinion of the general patient service provisions currently available for SCD patients, what level of experience do you think they are having?
Well, they are clearly getting a very good tertiary service, there is some exceptional specialist care available, and of that there is no question. The problems come when they are out in the community in their normal environment, school etc. When they are having minor problems that are not being managed in the way they should, so they have to rely solely on tertiary care. This would not be the case if there was a greater awareness and understanding of SCD as a chronic condition. If GPs and local communities generally had more understanding of the condition- and the impact it has on those afflicted, they would feel far more confident about treating and supporting these patients. Often it comes down to competence, and this is linked to understanding and awareness. You cannot competently treat a condition that you know nothing about.
You currently run a joint clinic with Dr. Subarna Chakravorty; consultant paediatric haematologist and Sickle Cell Disorder expert, please could you tell us more about this service and how it benefits SCD patients?
Patients are seen very regularly in a clinic specifically for SCD patients, however until recently a respiratory condition would be treated as an additional ailment in a separate clinic. Respiratory conditions are common in SCD patients, so it is crazy for them to have to attend two clinics. It made much more sense to combine the two, which is exactly what we did. By treating both conditions in one attendance patients and families get an enhanced care experience and also feel much happier that they are getting two consultants input, which they value. I am currently adding to the management, and expanding services. Obviously there is still a lot of research to be done but we have the impression that we are improving outcomes, and without doubt relieving some of the economic and time burden on families, which fundamentally improves their overall care experience.
We do a lot of work collaboratively with clinicians in the USA, looking at SCD patients with respiratory conditions specifically. They have interestingly established a similar approach to services and together we are always striving for improvement.
Our collaborative study is now in its second phase. Initially we looked at quantitative research- how much SCD patients were suffering with respiratory conditions, and when- did they have any respiratory induced sleep disorders for example – we found this to be common. Now we are focused on the impact over time of our intervention, following up with the children we identified these problems in and assessing how their conditions have evolved over time with our treatment methods.
How does SCD patient experience differ from other disorders?
There are a lot of common factors. There is a general problem with the handling of chronic conditions in our health system, in that they fall between levels of care; tertiary and general services. There is a tendency that these patients have nowhere to go between tertiary and local services, and end up relying on specialist care for minor ailments like coughs. Because the funding is commissioned centrally, there is a tendency for primary care services to a degree shirk responsibility when it comes to SCD, and encourage patients to use the national specialist services. It has been described as a fracture line in the commissioning system, but to my mind it’s not, it’s a huge gap! A huge gap that is full of the neglected patients falling into it, and we need to address it.
How could SCD general services be improved and therefore patient experience?
It’s about providing SCD services as close to home as possible, in a way that can be accessed by anybody, for example; health promotion, minor illness, support in the community. There is a need to raise awareness generally, and to improve the competence of the health service. There needs to be more awareness in schools and in the workplace. Pain massively affects patients’ performance in these areas, and it is necessary for people to understand that and be compassionate and provide support when it is needed.
Basically we need to have a clear action plan for when patients need to seek specialist care and when they don’t. We are currently working on a number of initiatives that will support this, including; training programmes for all health professionals, community champions to help raise awareness in the communities and act as mentors for sufferers, helping them to navigate through the health service in a way that gives them the least distress. Distress is a key word in SCD treatment, it occurs when people are fighting to get the care they need and we want to lessen this wherever possible. To do this it is crucial that we work with families and patients, who have these problems – not against them.
We can’t be paternalistic, we need to understand that patients and their families know best what their care experience issues are, because it is their first-hand experience. Alongside Picker we have run focus groups and set up resources to help support these patients and introduce them to the services available to them.
You have been a driving force behind securing the funding for the current SCD research project with Picker, why is this research so necessary at this time?
Working in North West London, where there is a large population of people with SCD it is clear there is a need for service improvement. But prior the current work on SCD, my work had been around asthma and related by allergic conditions. The CLAHRC Programme funded this and through its success. I now lead all CLAHRC “Early Years” research. We commissioned Picker to create a survey tool for allergic children to better understand these patients’ experience.
The project and tools developed for allergy patients worked really well, so well that we decided to take the same route with Picker again. They understand the value of discovering individual patient experiences, and that there is no one size fits all approach to patient care so well, and I think their work and approach to patient experience is great. It has been an excellent collaboration so far and I look forward to using the tools to improve SCD patient care significantly.