From InterAction 89, spring 2015
Dr Sue Pemberton is a qualified occupational therapist with more than 20 years’ experience working in the NHS. She first started working with people with M.E. when she was asked to design the original therapy programme for the Leeds & West Yorkshire CFS/M.E. service in 1990.
This programme was then adopted by many other CFS/M.E. services across the UK. Then in 2012 Dr Pemberton set up the Yorkshire Fatigue Clinic in collaboration with Dr Philip Wood. It focuses on adults and young people over 13 years of age with M.E. and other conditions where chronic fatigue is a key symptom.
The clinic accepts direct referrals from most of North Yorkshire and York. Patients can also self-refer, with information about assessment and treatment costs available from the clinic. The Yorkshire Fatigue Clinic is based at the Business Centre, Tower Court, Oakdale Road, Clifton Moor, York YO30 4XL. Tel: 01904 557148.
What drew you to the field of M.E.?
I have worked in the field of M.E. for 25 years, all starting from a simple request. At the time I was working as an occupational therapist in a specialist in-patient unit for people with a range of physical and psychological problems. I was approached by one of our doctors who was setting up a research study in M.E. with a consultant in infectious diseases.
At that time I was running group programmes to help people with long-term conditions such as stroke and arthritis. I was asked to write a group programme to be part of the research. There was very little written about the condition so we called on the principles used in other illnesses on energy and symptom management, grading activity and dealing with the impact of a disabling health problem. We recruited people into the research and once it was over there were so many people wanting to come that we continued to provide the group. I enjoyed working with people with M.E. because they were so motivated to improve and appreciative of any help that could be offered.
From that point onwards, whenever I moved jobs I requested that I continued working in M.E. This was how the regional M.E. service based in Leeds evolved. My determination to stay in the field led to my appointment as the first Consultant Occupational Therapist in M.E. and Clinical Lead for the Clinical Network Co-ordinating Centre.
Then in 2012, with changes in the local service, loss of my post and redundancy, I faced the prospect of leaving this area of clinical practice for the first time in 23 years. I made the decision I wasn’t going to walk away, and set up the Yorkshire Fatigue Clinic.
What is your role within the team?
In contrast to working in a large NHS organisation, in the first year there was no team; it was just me. I took on all roles, from dealing with enquires to assessing and treating the patients. In the last year two of my previous colleagues have joined me as the demand has grown. I manage and head the service but as a small occupational therapy team, we are all hands-on in all areas.
Occupational therapy fits well with the difficulties that people with M.E. face as it involves the analysis of daily activities and tasks to identify the physical, cognitive, social and emotional demands.
This is combined with an assessment of an individual’s current capabilities and needs to adapt tasks, plan patterns of activity and build towards life roles that maximise engagement in daily living. We work with barriers that can stop participation in valued activities, whether that is physical, cognitive, environmental, social or occupational.
To ensure we keep the costs down, both for the NHS and for those who pay themselves, we also do all the administrative roles ourselves, with the help of the building receptionist who answers our phone. We have set up networks with other professionals including a consultant immunologist and dietician, so we can offer a range of options based on people’s needs.
What happens when patients come to your service?
Many people contact us with questions and queries and from the very start it is important to us that people can make informed choices about what is right for them. If they are not from the local area we will talk to them about what services may be available and how to access them.
Since December we have held the NHS contract for three Clinical Commissioning Groups in North Yorkshire. As soon as a referral arrives, it is screened and, if it meets criteria for M.E, we contact the patient to discuss arranging their assessment. We book them in for a therapy assessment, which is the opportunity to get a full picture of all the symptoms and how they are impacting on that person’s life. We make sure there is time at the end to provide information on the condition and discuss how this relates to their experience.
The next stage of assessment is an introductory workshop, which enables the person and a carer/ family member or friend to learn more about the illness and the approach taken in therapy. The assessment ends with a care planning session, which gives time to review the priorities for each person and agree on an individualised plan for therapy.
Patients will attend either individual sessions, group sessions appropriate to the stage they are at, or a mixture of the two. For those unable to travel we have home based rehabilitation and use Skype, telephone or email support. For our young people there may also be joint sessions with education or other health services involved.
Therapy has to be a collaborative process and we constantly review if we need to adjust the programme to suit that person’s needs: one size does not fit all. Most of our patients will be working with us for about a year. Even when patients are discharged at the end of this programme, we offer continuing access to support if needed, particularly during relapses.
What challenges have recent NHS reforms brought?
It was fortunate that at the time I left employment with the NHS, new reforms enabled independent services to deliver care to individuals funded by the NHS. Through working with local commissioners who were aware of our expertise, we were able to apply for NHS funding for individual cases. This enabled patients to have the choice between continuing to use the NHS Trust service or accessing our service locally.
At the end of the first year we were thrilled when we were informed that, based on the clinical outcomes and patient feedback from our service, we had been appointed as the preferred provider in our area. At the end of our second year the opportunity arose to apply for the NHS contract for local Clinical Commissioning Groups. We developed our bid with the involvement of all our past and present patients.
I think that the fact that we are small and specialist has created an ethos of joint ownership between the staff and the people who use the service. This would have been difficult to achieve under the old NHS structures. Despite some people’s beliefs about the profiteering of private providers, we earn less than having a standard NHS job, but there is immense satisfaction that comes from being able to provide a personalised NHS service.
What advice would you give to a patient who has been referred for the first time?
Keep an open mind, ask questions to make sure this is right for you, and judge us on your experience. Many people have fears and concerns about seeing health professionals in this field, often based on their prior experiences. It is our job to understand and allay those concerns, to enable people to feel in control of their assessment and therapy, and ensure that it is a collaborative process.
There may well be things that people expect or want from a service that we cannot provide – yet – and we respect individual’s views. If you are not sure, talk to us or other people who have attended our clinic so you can make up your own mind about how we can work together.