Astrid Burrell is an Involving People Network member, a member of the Wales Huntington’s disease Involving People Group and now part of the BRAIN Unit’s Involve Group. She has been working with researchers in the Wales Huntington’s disease Involving People Group for over four years and tells her story here of how she is making use of her experiences as a carer.
My husband had Huntington’s disease for over 30 years and sadly passed away last year.
For many years I fought to get help from so many professionals who sadly had little or no experience of Huntington’s disease and consequently did not seem to fully understand its impact on carers and families.
Only the Huntington’s Disease Association (HDA) care advisers really understood, but they and their support groups were so far away, nearer to Birmingham and I lived in a rural village on the Welsh borders, so I never met anyone else with Huntington’s disease. It was as if we were the only Huntington’s disease family on earth!
I had looked after my husband for so long and through his illness lost my lovely home, business and family relationships. I had battled to get help whilst living with the illness and then feeling a failure, inadequate and guilty when he had to go into full-time care. Then when I was no longer a carer in the full sense of the word (albeit I spent a large part of my life travelling to North Wales to be with him) I lost my identity and sense of purpose.
After my husband had been in care in North Wales for quite a few years, I was sent details of a seminar and Open Day at a new care home in Herefordshire, specialising in the care of Huntington’s disease patients, and for some reason I decided to go along.
The decision completely changed my life.
I met a Huntington’s Disease Association care adviser, who told me that she was from South Wales and that Herefordshire would soon be in her patch as well. She then put me on the mailing list of the South Wales group, from which soon came the first invitation to join the Wales Huntington’s disease Involving People Group in Cardiff, which had just been set up.
In 2011, with great apprehension, I went to my first Wales Huntington’s disease Involving People Group meeting. Suddenly all those years of struggling were not wasted. Not only did people care what I thought, but here were researchers and other professionals who actually really wanted to know what I thought.
They accepted that although my scientific and medical knowledge might be miniscule, when it came to understanding actually living with the illness, sometimes I might even have more knowledge, which could perhaps be of value to them in planning and evaluating future research!
What an amazing feeling, so liberating!
It was as if suddenly my life had been worthwhile and I could now help others from my experiences. Not just my experiences either. Here at the meeting I met other Huntington’s disease families, all with totally different backgrounds and stages of illness in the family, yet almost all of the carers were a mirror-image of myself in the experiences they shared with the group.
This common bond of understanding, it was like coming home! With the Group co-ordinators, Professor Monica Busse and others in her team, and other Huntington’s disease professionals, at last I was in a room full of people who could understand me and where I was coming from.
I know that Monica perhaps thinks I am exaggerating when I say the Group has changed my life, but genuinely it has. It has given me some self-worth again, and I cannot thank Monica and the research team enough. I am so fulfilled and intellectually stimulated by the work I do, and in return I am made to feel so valued and appreciated.
Our job is to make sure that any documents relating to research projects are fully understood by the Huntington’s disease families who are invited to participate. Therefore, if you don’t understand something, or some wording is not very clear to you, it is exactly what the researchers need to know.
It is vital that anyone taking part in research knows and understands exactly what it will entail, and we can play a very useful role here in ensuring that this is the case.
They [the researcher team] have given me so much hope for Huntington’s disease families in the future, including my own, when I see how dedicated and enthusiastic they are in their research to try to improve the lives of people living with Huntington’s disease and to try to find a cure for future generations.
I now realise that they are inspired by the courage and determination of Huntington’s disease families, which is another reason why I want to do all I can in return to try to help them. We respect and inspire each other. I never realised before, this close connection and interaction between the public and researchers.
It is also a great opportunity to see at first -hand what is going on in the field of research and I feel very privileged to have been accepted in my small way as part of their team. I never realised that Cardiff is right at the cutting edge of Huntington’s disease research and this brings great hope to me.
So I would urge anyone who understands my feelings to become involved with the Group. You will be welcomed and valued, and you will be able to play your part in helping to shape the future of research into Huntington’s disease.
If you’re interested in joining the Involving People Network visit our Network information page. To find out more about the BRAIN unit, visit their website (external link) or contact firstname.lastname@example.org