Susie’s Story

Susie, aged 57 years, attended the Living Well Service and very kindly shared her experience:

“I am one of the very happy recipients of the wonderful Living Well services.  I have Muscular Dystrophy and about three years ago, I was at a stage of my condition when I felt that I needed someone to talk to – not my family or friends but a professional who could help me navigate my way through my feelings that I had about my condition and how it was affecting me mentally and physically. There is only so much you want to burden your family and friends with.

My incredibly supportive GP, Dr Lockyer, suggested I attend the Living Well service at Arthur Rank Hospice and said I would benefit from it. She sent a referral and not long after that I was contacted from the Living Well Service team and completed an assessment.

From the very outset the Living Well Service team were kind, empathetic and supportive to my needs and concerns. They were very happy for me to join their eight week clinical programme which ran for 2.5 hours every Thursday.

On my first day, as soon as I stepped in the lounge, I knew I was going to enjoy my experience.  From the warm greetings that I received, from not only the staff but the patients too – some of which have subsequently become friends.

Thursdays became a reason to get out of bed – we all had a purpose. We had a safe and supportive space to talk about our conditions and learn from each other and from the individual programmes that we all were invited to experience. These included complementary therapy, occupational therapy, physiotherapy and exercise, informative talks covering a wide range of areas, e.g. anxiety and stress management, exercise, music therapy and others.  I also had a 1:1 pain medication session which helped me understand how to manage my discomfort and pain properly.  In addition, I also had a number of sessions with the Clinical Psychologist and this helped me enormously in so many ways. Living with a lifelong chronic illness not only affects the individual but everyone supporting that individual too.

I think one of the areas that I benefitted most from was the complementary therapies as discomfort and pain is something I struggle with on a daily basis. Through the Living Well Service I have been able to experience different therapies and techniques which have helped me. The therapists are all wonderful, each one relieving me of discomfort and pain.

During the sessions we always had time to talk about ourselves and offer any experiences that we had, that might help others. An important one for me is that it took me many years to accept my condition and how it was affecting me. I struggled for years trying to keep my physical independence, walking with a stick, when I could have (and should have) used a mobility scooter. Because of that, I sacrificed valuable time that I could have spent creating memories with my family.

Once I started using my mobility scooter I realised the independence it gave me and I no longer felt fatigued going out and could walk alongside my family and enjoy my life. I always thought that people would stare at me but in fact people are so busy with their own life’s that they barely give you a glance! I am not a person to have regrets, but this is mine.

My message to others is don’t feel that you are giving up by using a mobility scooter, see it as a new way of enhancing and living your life. It allows you a new sense of freedom which for a long time was not available to me. Using my mobility scooter has broadened my life and has allowed me to travel abroad with a feeling of independence.

Along with the Living Well team they have incredible volunteers who are essential to the smooth running of the sessions. They are there with a cup of tea when you arrive and are there if you need your hand held, a hand massage or simply just want someone to talk to.

The Bistro –  again run by volunteers, is also where my friends and I would meet for lunch after our sessions and we continue to do this on a regular basis.

I am so very grateful that my GP knew of the Living Well Service at the Hospice and referred me. It has given me so much support since I have been attending and I can’t sing its praises enough. Anyone that has attended will always want to return.”

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Our ‘Outstanding’ services are provided free of charge to patients and their families. Our aim being to provide the highest quality care, helping people to make every moment count. You can find out more about how we are funded here: arhc.org.uk/how-we-are-funded.