Multiple Sclerosis

Multiple Sclerosis (MS) and Hospice Services
MS affects around 85,000 people in the UK. It is most commonly diagnosed between the ages of 20-40 and can affect both the young and old. Once present the disease will never go away: there is no cure and the person will live with that diagnosis for life. The disease follows an unpredictable course and life expectancy of some patients with MS can be reduced on average by 6-11 years compared to the general population. To someone recently diagnosed the prospect of years with a significant disability can be worse than death itself

The Hospice provides key elements of support to patients throughout their illness. This may range from psychosocial support in the form of the self-management group at time of diagnosis to a more focused and individualised package of care within the Day hospice when care needs become more complex. Other services such as counselling are also available as adjustment to living with this diagnosis may require specialist psychological support to help patients or their families face the challenges ahead of them. Rarely is care needed on a continuous basis; the exception being for some end-of-life care needs. The principles of palliative care are however applied at all stages of the disease through various models of care provision.

Self-management model
Earlier in the disease process the Hospice empowers patients to adopt a self-management model of care. This is recognised by the National Institute of Clinical Excellence as a beneficial and empowering means of support. Within our model patients mutually support each other, sharing skills, coping strategies and resources available. The Hospice provides a safe and caring environment for this to develop and works collaboratively with the local MS Society and Expert Patient Programme in order to help to achieve this. This is a self-supporting project so patients are also involved in the management and running of this service.

• Groups meet on a monthly basis;
• Groups are held on the 1st and 3rd Tuesday between 11am and 2pm;
• Tea, coffee and biscuits/cakes are provided;
• Access to disabled toilet facilities and comfortable lounge facilities are available;
• Dining room is available to carers if they wish to share coffee together;
• Access to experienced help available in case of extraordinary circumstances.

This project is in its early stages of development and at present no new referrals are being taken however if you are interested in joining then please do contact us as we will register your interest and contact you as soon as places become available.
A nominal charge of £5 per head per attendance is proposed to help support this project and will start in February 2007 however the Group is currently exploring alternative means of funding this.

Palliative Care provision
Palliative Care is a service for people severely affected by advanced, progressive life limiting conditions. The purpose is to maximise Quality of life during the advanced stages of the disease. It takes a holistic approach and provides symptom management and support for complex psychological and social issues for patients and families. All specialist palliative care is tailored to the needs of the individual. The Hospice provides Day Care, life affirming therapies, counselling and bereavement support to patients and families who may require this type of care provision. There are no cost implications to the patients for this service if palliative care needs have been assessed as appropriate by our multi-professional team.

End-of-life care
In the later stages of the disease patients may be unable to access Hospice services and may wish to be able to die in their own homes. Our specialist Hospice-at-Home service provides a comprehensive nursing service working in close collaboration with District nurses, GP’s and Macmillan nurses. This provides invaluable support to patients and families at this extremely personal and sensitive time. There are no cost implications to either patient or families should this service be required.

Caring for the carers
Some of our services are also available to carers of patients with MS. These can include access to our counselling services, complementary therapies and bereavement support. Any life limiting illness affects the family and carers too. All support offered is assessed in much the same way as the patients care is assessed so that a clear plan is in place to support the carer through their situation.

For further information on any of these services please contact Karen Rymell patient pathway co-ordinator on 01453 886868.