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Smart News Spring Mike 2005 Issue 18 Spring 2005 MSA SMarTThe newsletter of the Sarah Matheson Trust NewsNewsNews From the SMT office Contents As the year moves on through Spring, we are happy to report the continued expansion of the SMT - both in membership numbers and in the growing awareness Understanding of our work. We are delighted also to see SMarT News going from strength to Palliative Care 2 strength and really appreciate the input and feedback from our membership. Thank Research news 6 you all. As you can see from recent editions of SMarT News the fundraising efforts of NNIPPS update our supporters are increasing apace. We remain grateful to everyone who organises, Carers news 7 participates and donates; primarily because it enables our services to continue and Campaign bulletin allows the Trust to contribute to research. It also raises awareness of MSA which means that more newly diagnosed people have access to information and support at Hints and tips 7 a bewildering and isolating time. Remember that Niki can provide help to promote Extra sources of help and publicise your events, so please contact her. We are pleased to welcome on board another volunteer, Liz Balmford, who Fundraising 8 responded to Val Fleming's request in the last SMarT News. Liz will be helping to collect Gift Aid on all the fundraising donations, which given the increasing volume of fundraising is quite a task. For every £1 donated to the SMT by a UK taxpayer we can claim 28p from the Inland Revenue! This is a really effective way of making your donations go further. So we are indebted to Liz for this valuable help. Also new on board is Darcy Hare, our latest addition to our Trustees - bringing their number to eleven. All our Trustees have a link to MSA through family and friends. Darcy is Sarah Matheson's niece. She grew up in London, where she lived Marathon Mania with Sarah for several years. Darcy ran the London Marathon for SMT in 2004. She currently works as a project officer for the Independent Police Complaints Letters 10 Commission. Holiday report, help with home The feature in the last edition about brain donation clearly caught people's insulation & council tax reduction attention judging by the response both here at the SMT office and at the Queen Square Brain Bank. It was a challenging subject to write about but we have Articles on offer 11 expanded on this experience in bringing you this edition's feature on palliative care. Membership There is a clear move within the palliative care community to extend their skills and Numbers 12 services beyond the traditional remit of cancer services. Some of our members are already benefiting from this and we hope that as a result of the article many more members will also have this opportunity. We look forward to meeting as many of you as possible as we go out and about this year. Invitations to all our Awareness Days will, as usual, be posted to all our local members. Catherine, Alison & Niki The Sarah Matheson Trust provides a support and information service to people with Multiple System Atrophy (MSA) and other autonomic disorders, their families and carers, health care professionals and social care teams. Next issue: We also sponsor and support research into MSA Speech & swallowing Palliative care Misconceptions about palliative care abound. To encourage members to use them at the right time, we have asked some palliative care professionals together with some of our members who have used palliative care to share their experinece. Understanding Palliative Care s you find out about Multiple community care are just two such ASystem Atrophy you may have services. Palliative care is committed to “If you think that read or heard the phrase 'palliative care'. helping people experience pain-free If a disease is not curable then palliative comfortable deaths but they are just as palliative care is treatment will manage and reduce the committed to helping people to get as only about problems caused by symptoms. much as they can out of each day so Palliative care is a coordinated way to hospices are often vibrant dynamic depressing hospices treat an incurable illness in its advanced places. – think again.” stage. A progressive illness like MSA fits If you thought that palliative care is into the range of services and symptom only for people dying with cancer - management that palliative care offers the message we give about the role of think again. In the past palliative care once the advanced stage is reached. palliative care in the longterm has been centred around hospices for management and care of those with people with cancer however there is An integral part of health care MSA. now an increased awareness of the need Providing palliative care should be an Palliative care can be very useful in for this type of care for other non integral part of every health and social MSA in several ways. Firstly it can curable conditions like heart conditions, care professional's role (NICE, 2004). focus on managing difficult symptoms kidney failure and neurological (brain If palliative care is useful in MSA why such as swallowing or breathing & nerve) conditions. doesn't everyone get offered it? problems. If you think that palliative care is MSA is an unusual condition and Secondly, palliative care teams may only about depressing hospices - think not every health professional may be be able to offer additional care either at again. While hospices are often central aware that palliative care is appropriate. home, in hospice day centres or respite places for hospice care they are Some care professionals may also not care. increasingly only one part of a variety have had the training and support Finally, while the primary focus of of palliative services. Day centres and required to discuss difficult issues such palliative care is always the person they as living with an incurable disease and are treating, palliative care teams dying and others may not recognise the recognise that MSA impacts not just on “Palliative care can advanced stage of MSA so won't know the individual and place great emphasis when to refer to palliative care teams. on supporting the whole network of focus on managing The SMT are working on all these family and friends. difficult symptoms problems by educating health care To dispel misconceptions about professionals. Members of palliative palliative care and encourage members such as swallowing care teams are regularly attend the to consider using them at the right time or breathing education sessions at our Awareness we asked a group of professionals in Days. They add to the discussion palliative care together with some of problems.” amongst the health and social care our members who have used palliative professionals present - and reinforce care to give us their views. 2 SMarT News – The newsletter of the Sarah Matheson Trust Palliative care What are palliative care Qservices? The palliative care nurses from the local hospice visited my husband at ■ Palliative care should work in home, assessed his needs, decided on the best action to take to relieve his partnership with existing services, be symptoms and liaised with his GP. They also offered emotional support available on the basis of need and and bereavement counselling at the appropriate time. available to all patients. The range of We were also offered 'hospice at home' and Crossroads for Carers services on offer may vary slightly from who both offered much needed help to sit with my husband at night. Margaret Smith region to region but will include symptom control, psychological and emotional support, spiritual support, ● Complementary therapies offer care should incorporate the following and social support (including benefit relaxation and reduction of anxiety principles: advice and liaising with social services through therapeutic massage, ● Affirms life and regards dying as a for support at home). Mark Perrin aromatherapy massage, reiki, normal process reflexology and can be offered to ● Neither hastens or postpones death ■ Palliative care services are provided inpatients, outpatients and relatives. ● Focus on quality of life by multidisciplinary teams of ● Bereavement teams offer support to ● Holistic/whole person approach professionals and may include: relatives following the death of a ● Care of the patient and also those ● In-patient units offer admissions for loved one. Melanie Carthy who matter to that person symptom control, respite care and ● Respect for patient autonomy and for terminal care. Admissions tend What is palliative choice to be short term for the management Qcare? ● Emphasis on open, sensitive and of symptoms or fixed respite ■ Randall Jones, Clinical Nurse honest communication periods. Specialist on the Palliative Care Team, ● Community palliative care teams St Mary's Hospital, London feels that it Can palliative care help offer advice to generalist healthcare is the care of patients with an advanced Qconditions like MSA? professionals such as district progressive illness. Involving the ■ Palliative care specialists, through nurses or GPs and offer support to management of physical, psycho- working in partnership with general patients and their relatives with logical, social and spiritual problems, healthcare professionals can offer monitoring and management of by offering support in helping people helpful advice on a number of symptoms and have knowledge of achieve the best quality of life. symptoms. They can offer expert advice their local area with regard to on the assessment and management of available services including ■ The staff at St Giles Hospice, pain, dizziness, bowel and bladder voluntary organisations. Lichfield added that “the goal of problems, swallowing and breathing ● Hospice at home teams can offer palliative care is to optimise the quality difficulties, mood changes and fatigue. crisis intervention at home to of life for both the patient and their They can also act as a referral point prevent admission to acute family.” to other specialist services such as hospitals.
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