The goal of palliative care is to achieve the best possible quality of life for a person with severe or complex health needs. Palliative care focuses on your individual requirements and experience, and not on the underlying disease. It should involve you and your family, helping you manage your MS symptoms and providing emotional and spiritual support as you require.
You can access palliative care whenever you feel you need support with managing your symptoms. Contrary to popular belief, this is not just for those in hospices with terminal illnesses. There is no age limit for accessing palliative care, and it need not involve a move to residential care or a hospice. A lot of palliative care takes place in people’s homes and elsewhere in the community.
You remain under the care of your GP and MS team, but can be referred to a hospice to receive specialist palliative care services such as:
- A home visit to assess your mobility needs and provide equipment to help you be comfortable and independent at home.
- Classes such as mindfulness, pilates or yoga, so you can learn techniques to help you cope with symptoms like pain and anxiety, or help you exercise safely.
- Help with rehabilitation after a relapse, maybe through physiotherapy.
- Consultations with specialist clinicians who may be able to adjust your medication to relieve chronic symptoms.
- A temporary stay in a residential setting, in order to provide respite for your usual carers, or when they are unavailable.
- Help with managing your financial and legal affairs to ensure your wishes are respected.
- Help to plan your future medical and palliative care, should your symptoms progress or become more complex.
The National Service Framework (NSF) for long-term conditions, which was published by the Department of Health in February 2005, included palliative care as one of its quality requirements. It stated "People in the later stages of long-term neurological conditions are to receive a comprehensive range of palliative care services when they need them to control symptoms, offer pain relief and meet their needs for personal, social, psychological and spiritual support, in line with the principles of palliative care."
A recent study suggested that MS patients were less likely to be referred to palliative care than those with other complex conditions, even though they could have benefitted. Your neurologist or MS team may not have close links with the care providers near you, but you can ask to be referred at any time. Hospice UK has a directory of hospice and palliative care services where you can find your local palliative care providers.
- BMJ Neurology 2016 16:3 Full article How integrated are neurology and palliative care services? Results of a multicentre mapping exercise
- Multiple Sclerosis Journal 2016 22 (1) 13-18 Summary Opening locked doors: Integrating a palliative care approach into the management of patients with severe multiple sclerosis
Study finds poor integration between neurology and palliative care teams
A study has found wide variation in how much palliative care and neurological teams provide joined-up services at eight sites in England and Wales. There was least coordination in services for people with MS.
How can palliative care help?
People with MS aren’t always aware that palliative care might be available for them, and so are missing out on care that could make a real difference to their quality of life.
People with advanced MS miss out on palliative care.
A 2015 report by Marie Curie suggests that people with neurological conditions including MS are missing out on care that could make a real difference to quality of life.