24th October, 2012
Headway Cambridgeshire’s Community Services team offer a range of services to adults with brain injury across the whole county of Cambridgeshire. The team also recognises the effects of brain injury on the lives of family and carers, extending support to them too. The help needed can take a variety of forms and can change over time. Between them, the team supports clients in coping with every-day challenges, such as interacting with other health care or service providers or service providers or coping with financial arrangements. The team also offers signposting to other services as well as providing opportunities for combatting social isolation and much more besides. We looked at the work of the team through one particular community client and found that a collaborative approach with the clients can yield very positive results as the following case study shows.
Mark was a 41-year-old proactive and keen gardener running his own gardening maintenance business. But the cumulative effects of a number of head injuries over the years took their toll and left him fatigued and frustrated. Mark had to stop running his business because he could no longer manage the physical nature of the job and was trying to work six hours a day as a temp, which he acknowledged “wiped him out”.
The effects of his injuries were also impacting on his relationship with his wife, who was taking more of a caring role, supporting him to remember day-to-day tasks and struggling with his mood swings. Mark had initially received some support from the Headway UK helpline which had given him basic information about brain injury and its effects. He was however, struggling to take all of the advice on board and work out how to apply it to himself. He was consistently pushing himself to extreme fatigue and then struggling to deal with the after-effects. Mark said: “I felt isolated, alone and scared. I didn’t know how to cope with it. I needed someone to lean on, someone to understand and listen.”
Initially Headway Cambridgeshire’s Community Brain Injury Advisor (CBIA) offered advice and reassurance. Mark was frustrated that a number of medical investigations over the years had never led anywhere. The CBIA encouraged him to follow up on the results of a scan and to access the Neuro Trauma Clinic through his GP, who made a successful referral. The CBIA supported Mark through the waiting time that followed this referral, providing reassurance regarding concerns about an MRI. Mark also received additional support from Headway’s Hospital Brain Injury Advisor (HBIA) at the Neuro Trauma Clinic appointment to assist with his anxiety. As a result of his assessments Mark has now been referred to a specialist team for psychological support with the effects of his injury. Mark has continued to absorb information and has made use of the lending library to access a range of books with further advice and strategies.
The CBIA also provided more practical support with form filling to gain access to key benefits. When an initial decision was that Mark was not eligible, Mark and his wife, Christine, felt confident enough to appeal on their own and are awaiting the result.
Mark and Christine were encouraged to continue to use the Headway UK helpline for crisis management support when he felt that he couldn’t cope. However, he was also encouraged to spot triggers for when his fatigue level was rising and to experiment with pacing himself to prevent escalation of his mood. The CBIA also spent time working with Mark specifically on pacing strategies, using a weekly timetable to map out activity to find a level that suited him. Over time, his phone calls to the Headway UK line and to the CBIA reduced. Mark felt able to apply for a part time job near to his home, after talking through the implications with the CBIA and working out how to manage any possible effects on his fatigue. Mark said, “The coping strategies you gave me were amazing.” and that he wouldn’t have thought about applying for a part time job without the CBIA support: “You gave me the confidence to change direction.”
The CBIA noted that Mark had also become increasingly socially isolated as he had lost interest in a lot of the activities that he had previously enjoyed. He had lost confidence and was anxious about social situations where people might ask about his life. He had withdrawn from friends and found it difficult that he was reliant on Christine. He was missing “a sense of adventure”. He was spending a lot of time on his own at home. The part time job gave Mark more of a sense of purpose. It meant that he met new people and it helped him to feel he was making a contribution. He said: “It stops me feeling useless.” Mark and Christine have also recently decided to get a dog and now they have ‘Rocky’ who is helping Mark to get out of the house and meet new people.
The CBIA also ensured that Mark was added to Headway Cambridgeshire’s mailing list and received invites to social and support events. Mark and Christine have attended social events with other people with brain injuries and their families, gaining vital peer support and accessing support from other services including the carer’s support team. Support for both Mark and Christine has been crucial throughout the process and Christine benefitted from support from Headway Cambridgeshire’s Community Occupational Therapist, who provided simple tools to help Mark recognise his different moods earlier. Mark says that this helped to improve their relationship.
Mark says “I don’t feel as anxious or scared as I used to. The schedules have helped me to get a grip of my fatigue.” The key was to focus on the smaller steps that need to be made and to celebrate each achievement. Mark can’t believe it when he looks back over the last couple of months and realises what he is now achieving. “It’s been amazing, I got the help I needed to get going in the right direction. You settled me down and sorted me out.”
Mark: “A huge awesome thank you to you all for your ongoing support through this difficult period.”
Headway: “It can take quite a while to work on a particular situation and to put strategies in place to make improvements. The team aims to work with clients and their families, empowering them to make small changes that help them regain control over their own lives and rebuild confidence.”
In this particular case study, three members of our Community Services team were involved in supporting a client and his wife over a period of several months, to help them make some positive changes. So this is really the story of several months' of support, rather than a 'day in the life' of the team. The clients felt they had benefited from the support that Headway had provided and they had improved their situation. But that isn’t the end of the story. Headway Cambridgeshire will continue to be available and to provide advice and support as appropriate.
“ The Hospital Brain Injury Co-ordinator became someone who absolutely understood how I felt, I didn’t need to explain. I could talk about my fears and worries. She was such a great support through the difficult days, but could also celebrate the small step successes, which was important to me. ”