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How can palliative care help?

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People with MS aren’t always aware that palliative care might be available for them. Research by Marie Curie last year concluded that people with MS are missing out on care that can make a real difference to their quality of life because there is limited understanding from both health professionals and the public of what palliative care can offer, who can benefit and when the time is right time to access it. Below Diane Shenton shares the story of one woman who benefited

Quote from Diane Shenton

When I worked as a specialist palliative care nurse at a hospice, a 44-year-old lady called Linda with primary progressive MS was referred to us. She had limited mobility, used a wheelchair and complained of severe neuropathic pain in her legs and feet, which was disturbing her sleep and making her feel anxious.

Following a holistic assessment and planning mutually agreed goals, Linda agreed to attend our day therapy unit at the hospice to participate in relaxation and complementary therapy sessions where she learnt skills to help her to relax and learn new coping strategies.

We also changed Linda’s medication and she responded well to amitriptyline, which helped her to sleep, reduced her anxiety and stabbing pain in her legs. We then added pregablin, which Linda felt controlled the burning pain in her feet.

These drugs had previously been prescribed independently and initially at higher doses, which Linda could not tolerate. This regime is not a panacea for all, however, drawing from experience, knowledge and palliative guidelines, we were able to control Linda’s pain.

The hospice physiotherapist and occupational therapist reassessed Linda in her home and were able to make recommendations to improve mobility and independence. We also discussed the notion of future planning, which prompted Linda to set up a Lasting Power of Attorney with our support. Six weeks later Linda told us she felt relaxed, comfortable, more independent and pain free. She agreed to be discharged from the service and was happy to contact us again if required.

I recall Linda saying to us, “If only I had known that the hospice could have helped me earlier.”

Her pain had been problematic for many years. Before hospice input she was beginning to think that she had no option but consider transfer to a nursing home – a decision which Linda felt at her age was inappropriate.

Have you made plans for your future? We'd like to hear about your experiences for an article in future issues of Open Door. To share your thoughts email opendoor@mstrust.org.uk

 


This story is part of the May 2016 issue of Open Door. Read the whole issue. Sign up to receive the latest news every quarter.

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