09 January 2025
Jacqueline Pooler is one of three Behçets patient support coordinators England, each of whom is based in one of the Behçet's Centres of Excellence, located in Liverpool, Birmingham, and London. The centres are NHS England commissioned and may accept referrals from devolved nations once appropriate health board funding is in place.
The Centres deliver a one-stop-shop clinic model, where patients are reviewed by several MDT members within the same visit.
What does your role involve?
As patient support coordinators, much of our work is remote, contacting patients by telephone, e-mail, and text. We listen and ask what is important in their life. Our support spans a range of areas for example signposting to assistance in reclaiming transport costs to enable clinic attendance at the national centres, directing them to the Behçet's UK charity for peer support, and supporting employment by ensuring they understand their rights in the workplace under the Equality Act.
Advice regarding welfare rights and benefits is often requested as the PIP process is quite complicated. For children and young people, we are able to assist them around maximising participation and achievement in education by directing them to relevant support and liaising with schools or universities to ensure their needs are understood. A further aspect of the job I particularly enjoy is looking holistically at the patient’s well-being, including encouraging them to undertake activities, and get involved in groups. That's in keeping with the NHS push towards social prescribing and supporting patients to look beyond their illness.
Once a week I attend clinic in the adult hospital, (three-monthly for paediatrics). When I meet a patient in clinic, I give them my contact details and will say to them that we'll be in touch with each other frequently. That's how the relationships develop; you meet the patient in clinic and then you carry on through until the piece of work you are helping them with is sorted. Sharing information with the clinical team about patients I have been supporting is important. Often I can give the doctors and the lead nurses a perspective of the patient that they might not know about, giving them a more holistic picture.
It’s important to note that we can’t really work with the patient until they've had a diagnosis of Behçets, other than giving information about their visit to clinic to reduce anxiety, or signposting to other sources of information and support. More detailed individualistic work including writing support letters can only be done post-diagnosis.
What is your background and how did you get into this unique role?
I am from a nursing background and worked in many different areas before spending the last twenty years of my nursing career in palliative care. I retired in 2013 and saw this job advertised the following year! Initially, the job was focused mostly on welfare rights and benefits. But my other two colleagues and I have promoted evolution of the role, to encompass all the aspects previously discussed. We promote our holistic approach and encourage patients not to be defined by their disease.
What feedback have you had from patients?
As patient support coordinators, we all get formal and informal feedback which is generally very positive. Patients will say we're supportive, good listeners, and that we make time for them. They say that we make the clinic visit less worrying because we do a meet and greet; checking in with how they are feeling, explaining how the clinic works. Most importantly, patients also say we treat them as individuals. I always say patients are people first and patients second and we must never forget that.
Do you have any important messages to health professionals working with patients with a diagnosis of Behçets?
I guess it's what patients tell us; things like ‘I'm a whole person, I'm not just a collection of signs and symptoms’. We would say, consider both the psychological and physical impact of the condition. Some symptoms can be very difficult to live with and can intrude on areas like personal relationships and career opportunities. It is worth appreciating the notion of it being an invisible disease. Patients can really be struggling but others might not realise. Finally, perhaps ask about employment or education, and their hopes and desires for the future. It’s vital for patients to know that they're going to get well enough to have a future that's outside of being ill and to have encouragement about what they can achieve.
Finally, what do you enjoy most about the job?
I enjoy my face-to-face contact with the patients in clinic the most. Its lovely to be able to welcome them and put them at ease. I also enjoy working with the nursing and medical team and knowing that my role complements what they do. Another aspect is helping patients to live their best life and giving them a hope. With such a complex disease, you see little victories.
Jacqueline's useful links and further reading:
- Behçet's UK is the only charity we recommend and it's the charity that the consultants work with. On the website are many useful links including booklets about employment for patients and employers, a booklet for teachers, and a link to the recording from the Behçet's UK Annual Conference.
- This article gives some further background to the National Behçet's Centres of Excellence, the role of the Behçets support coordinators and the MDT model used in clinic.