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MSA and how the Hospices can help

Allison1Multiple Systems Atrophy (MSA) is a rare, neurodegenerative disease that leads to premature death. With no known cause or cure, it appears to strike at random – normally when people are in their 50’s. Only 3,000 people in the UK have MSA, symptoms include problems with balance, movement, swallowing, speech and bowel and bladder control.

MSA can be very difficult to diagnose as Allison Ellerby from West Byfleet found out. After numerous tests, she was finally diagnosed in early 2013 and recalls how she felt when given the news; “I received the diagnosis at St. Peter’s Hospital in Chertsey. Words such as ‘progressive, degenerative disease’ and ‘life-limiting’ whirled around me. A matter of a few minutes later my husband and I were left clinging to each other in a hospital corridor. We were in complete shock. We remained clasped to each other and motionless despite the hospital busying itself around us. We had never felt so alone before. There was nobody there to explain, to listen or to catch us.”

But soon after that devastating day, and after a referral from her GP, there was someone there, as Allison came under the care of our Hospices. Since those early days she has benefitted from home visits by the counselling and clinical nurse specialist team, visits to day care for therapies to help challenge her muscles and improve her breathing and has also been referred for hydrotherapy sessions which are really helping to keep her mobile.

Exactly how MSA progresses is uncertain and therefore the Hospice has adapted its care plan and techniques as the condition has developed. Recently Allison came into the in-patient unit for a week of planned respite and intensive physiotherapy and talking about it she said “ Some may see this as delaying the inevitable; I see it as making sure that I am able to properly enjoy whatever life that I have left. I cannot fault the hospice, nothing is too much hassle. It is all those little human considerations shown to me that makes the hospice experience so very different from what happened to me in hospital in the early days. Alongside the physical care, the emotional support has also proved vital to us. My husband and I have both received professional counselling and my husband participates in carer support programmes. I am also half way through completing my End of Life Plan which, as I contemplate my future and put things in order, is proving surprisingly comforting.”

Given the emotional and practical investment made by so many at the Hospice, Allison and her husband both see hospices as places that should be celebrated and embraced which is why she has agreed to tell her story to raise vital funds and awareness of hospice care. She also wants to help other MSA sufferers by dispelling the myths around hospices and help them find the specialist care that they need. She explained “I meet others with MSA who are too often still in that same dark place that I once inhabited. Despite sharing my experience, they are concerned that turning to a hospice for help would be an admission of defeat and a ‘one way ticket’. Slowly they will see that a Hospice can show you there is a lot to live for – and that they help you do just that. I often say that the hospice ‘saved’ me and it has.”

Last year we looked after 1,200 patients as well as their families. This was 12% more than the previous year. Not all had such an unusual condition or have been treated for as long as Allison, but she is far from unique. As the range and complexity of conditions we treat is continuing to increase, all our care is freely provided thanks largely to the support we receive from the public. Though the majority of patients have a cancer, today we are nearly as likely to be asked to care for people with heart disease, Motor Neurone Disease, chronic pulmonary conditions, Parkinson’s disease or Multiple Sclerosis amongst others. Our teams are committed to rise to this challenge and to keep providing the sort of care offered to Allison for all in the future.

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