Bringing occupational therapy into the MDT
Last year’s APPG report contained 18 key recommendations designed to address both the issues identified and the unmet needs of people with bleeding disorders. Recommendation 1 states that: ‘All comprehensive care centres should have dedicated physiotherapy, occupational therapy, social work and psychology services.’ So far, only one centre in the UK employs a dedicated occupational therapist. Belfast Centre Director Gary Benson and occupational therapist Claire Forde explain why they chose to grow the service in this way and its impact on people with a bleeding disorder.
The Comprehensive Care Centre in Belfast serves a population of about 1.8 million. It has approximately 80 registered patients with haemophilia and a small number with other rare bleeding disorders. In July 2020, the centre became the first in the UK to appoint an occupational therapist (OT) as a full member of the multidisciplinary team.
Centre Director Dr Gary Benson was struck by the potential of OTs when he saw at first-hand how they worked closely with a social worker and physiotherapist in transitioning a patient to home after admission following an intracranial haemorrhage. Their roles, their assessments and the language they communicated with all recognised the patient as an individual, not a diagnosis, and focused on how that individual lived with their bleeding disorder rather than managing the disorder itself. The OT saw the bigger picture, showing how interventions should be determined by a person’s needs, not by what health professionals believed the ‘correct’ components of a care package should be.
Claire Forde explained that OTs look at how a disorder affects a person’s ability to function and its impact on daily life. She came to haemophilia care from a background in community care before moving to oncology and haematology in secondary care, finding she needed to supplement her core skills to deal with the physical and mental health issues specific to haemophilia and its impact on daily routine, school, work and family life.
People who attend the Belfast Centre see Claire in the same way they would see any member of the MDT – it’s not a question of ‘We can make you an appointment to see the OT when she’s available.’ The outpatient clinic is multiprofessional and patients can see individual team members at other times when they need to, or by phone or video consultation if necessary. Patients’ needs are formally discussed at the MDT, on the weekly ward round (also multiprofessional) and, as necessary, between team members. All staff are aware of the progress of each patient, and who is attending the clinic in the coming week and what their needs are, so that the appropriate individuals are available and prepared at the right time.
Good communication between MDT members is key to delivering this one-to-one bespoke service to patients – not least because the OT is a new addition to the Belfast team whose role is still being developed while working out how to deal with overlap with the roles of other team members. Many are familiar with making a case to reappoint or expand an existing post; introducing a new discipline, by contrast, required thorough groundwork to define patients’ unmet needs and show how an OT post would address them. Gary emphasised that the case for an OT is not about meeting generic criteria defining service requirements but in showing how the post would meet the needs of individual patients. It’s what support do patients need, Gary said, not what does the MDT want for itself, and it was this approach that swayed the Trust and the commissioners.
Claire has raised awareness among the staff and patients alike, liaising with a wide range of disciplines outside the MDT, such as paediatrics, rehabilitation and community care. She has brought a new energy and a different perspective to the MDT, Gary added: ‘it’s refreshing to be challenged about practice that has become accepted simply because it’s what everyone does.’ For example, it was salutary when the team was reminded that chronic pain is just one of the many issues that are not resolved by ‘effective’ factor replacement therapy.
Claire’s approach is to ask a patient, ‘What can you do?’ not ‘What can’t you do?’ – a positive attitude that focuses on an individual’s potential, not their limitations. This supports the MDT to ask ‘What can we do to help you?’. Claire has been able to help patients with employment rather than seeking other forms of financial support. This was something not previously integrated in the MDT and has undoubtedly benefited young patients at the centre. Feedback from the patients shows these interventions have been welcomed and made individuals aware of options they had not previously known about.
As ever, outcomes need to be measured. Claire has already been involved in a pilot study to determine patients’ understanding of the role of the OT. This showed that the priorities of patients were not always what the staff expected and included physical activity, sleep and pain management. Some outcome measures are specific to haemophilia but others used by OTs will be suitable for measuring outcomes, such as the Barthel index of daily activities and work ability scales. These will complement personal audit and documentation of individual patients’ improvement and engagement. The challenge is to find robust measures that are practical to apply and determine how best to use the MDT’s resources.
Mental health has been more prominent that expected, Claire said, and her response has been to foster good mental health rather than focus on whether a person needs to see a psychologist or a counsellor. She has collaborated with other agencies on projects to help people get out and about and meet one another in informal settings. Social activities help to build trust and mutual support and can help people to open up about their concerns. One initiative, now in early development with a conservation agency in Northern Ireland, is a project to support people with allotments and gardens to grow vegetables and flowers. There is good evidence that gardening has a beneficial effect on mental wellbeing and, while horticulture is not necessarily within the OT skillset, Claire saw her role as drawing in different professions to promote shared learning. People benefit from being active, she added. This doesn’t need to be big and grand: it’s the small things in life that make us tick. Hopefully, patients see importance in the everyday experience and recognise how it improves their quality of life.
Gary agreed, saying it’s empowering for patients to know what they can do and can be, rather than follow the MDT’s lead. Think of the MDT a bit like a car rescue service, he said. The RAC is there to fix problems with your car, if and when they crop up, but they don’t follow you around all the time. Similarly, the MDT is there when you need help.
How can other centres learn from the Belfast experience? It’s not necessarily about getting an OT, Gary said. It was the right solution for Belfast: as well as enhancing what the service can offer patients, the post will provide the additional support needed to establish a radiosynovectomy service for the many patients who have problem ankles. Every service should be fluid and responsive to what their patients want – it’s not about the MDT’s priorities. That said, an OT is an invaluable addition to the MDT that is always worth considering.