Funding from the Evelyn Trust has allowed the Evelyn Community Head Injury Service (ECHIS) to develop over the last four years with relative independence from traditional NHS processes. This has been a journey not only for the patients, but also for the staff and service itself.
When 38-year-old Sally Markwell from Ely went for a routine mammogram she passed out and fell back off the machine, hitting her head on the floor. It was to be the start of a life-changing experience that would initially throw her into an isolated and frightening place of confusion. “In the months after the fall I changed completely. I would feel dizzy, I would feel so very tired and tearful, I felt anxious and scared. I couldn’t watch the TV or read, I couldn’t tolerate noise or bright lights. Too many people around me would make me feel bad. I couldn’t drive and everyday tasks felt like such an effort. I was unsure of what was happening and spent most of my days crying.” Sally’s family became so worried, they pushed the GP for a referral and they were finally put in touch with the Evelyn Community Head Injury Service or ECHIS at Addenbrooke’s Hospital in Cambridge.
Set up in 2010, the service offers support and information to adults in Cambridgeshire who have had a traumatic brain injury. Consultant in Neuro-rehabilitation Dr Judith Allanson believes the support it offers is unique “It simply didn’t exist in this part of the world before. Although good work was being done by some community support services, there was nothing specific in the Cambridgeshire area for patients who had recently suffered a head injury, or their families trying to live with the consequences. It was clear to clinicians that there was no NHS support system where they could be referred immediately after discharge from hospital. We set up the service to fill this gap, and it’s been incredibly successful.”
Sally Markwell’s life changed dramatically for the better once she’d made contact with the group. “To hear that someone understood was the start of my recovery. Up until that point everything was so uncertain and there were no answers. But at my first meeting I was made to feel at ease and they explained what they could do to help. I finally had support, someone to listen and to help me.”
Patients are checked and tested at the clinic before going for an initial assessment at Brookfields Hospital or at a venue closer to their own home. They’re then offered support through individual or group sessions, usually over a number of months for both the person with the head injury and their families. A multidisciplinary team then works on rehabilitation programmes tailored to meet individual needs and goals. Judith Allanson is clear that it’s access to this unique level of expertise that makes the service so successful. “These are senior, experienced therapists helping professionals from a wide range of partner services in different localities. Between them they analyse and assess each patient’s situation to the highest level of detail, which means the patient receives the best possible support at the point of care.”
One of those experts employed by Cambridgeshire Community Services is clinical psychologist, Kate Psalia who has been working at ECHIS since day one. Sharing expertise and responsibility between the support staff is clearly a priority. “It’s really important to have that sense of team work, of ‘mucking in’ , because it gives the patient a sense of consistency. They tell us it makes them feel understood.” Brain injury is an uncertain and difficult field to negotiate, but Kate and her colleagues believe they are steering a steady course. “It’s a real honour to sit alongside these people as they go through this journey. To see people struggle with the difficulties of brain injury and to come out the other side is humbling. Brain injury affects everyone and to hear how these people and their families find the determination to keep going is just incredible.”
Outcomes are difficult to measure, but the response from patients and their families so far has been overwhelmingly positive. Out of the first 30 people reporting for annual reviews, 27 said they’d experienced an overall improvement in their mood and their ability to cope generally with many achieving their main ambition to return to work. Patients say feeling supported and understood is enough to help them develop. It gives them the confidence to move away from a place of stagnation, to work toward achieving personal goals. Perhaps the most telling evidence is that patients gain independence which allows them to leave the service and to get on with their lives.
Looking to the future, Judith Allanson now wants to build on the work already done by creating a head injury registry to better understand the scale of the issue. The aspiration is to extend the service to a wider group of people, not just traumatic head injury victims but those suffering from brain injury, haemorrhages or other “one off, rather than progressive conditions”. She hopes that if it’s successful this work could be used as a template to design other future rehabilitation services across the country.
Given the ground they’ve covered in the past five years it’s a relief to all involved to learn that this type of service is now supported by the Cambridgeshire Clincial Commissioning Group. Initially set up with money from the Evelyn Trust, it was agreed that after five years the NHS would take over. The CCG interest should ensure groups like the ECHIS are included in all future community neurorehabilitation units. “It means the service will continue to exist and that’s great news for everyone. It may not remain in its current form; it may change and evolve. But the crucial thing is that it will survive to provide the support for those who need it.”
The initial donation from the Evelyn Trust has allowed relative independence from traditional NHS processes so that the growth of ECHIS over the past four years has not only been a journey for the patients, but also for the staff and the service itself. “The autonomy it’s given has allowed us to discover new systems and new ways of working to provide very specific and bespoke treatment plans. This spider’s web reaches out across all sorts of different partner agencies and volunteer organisations to really give patients the support they need. I hope other NHS departments will be able to learn from this, and use us as an example of what’s possible”, says Judith. “I hope it will encourage other teams to work in this truly integrated and multiagency way.”