Multiple sclerosis (MS) affects more than 100,000 people in the UK.
It is a neurological condition that affects the brain and spinal cord (the central nervous system). In MS, the body’s immune system turns against itself and, instead of fighting off infection, starts attacking the myelin coating surrounding the nerve fibres in the brain and spinal cord.
There are different types of MS – relapsing remitting, secondary progressive, primary progressive, benign and Marburg MS.
Around 85% of people with MS are diagnosed with relapsing remitting MS, where relapses or attacks of symptoms occur for a period of time – days, weeks or months – and then improve, either partially or completely.
Some people with relapsing remitting MS go on to have secondary progressive MS, where symptoms have become progressively worse over a period of at least six months.
Around 10 to 15% of people diagnosed with MS will have primary progressive MS, which don’t have any distinct attacks or remissions, but begins with subtle problems that slowly get worse over time.
If someone has had MS for many years and it hasn’t worsened, and they have little or no disability, they might be said to have ‘benign’ MS.
More recently, Marburg MS has been discovered – this is an aggressive rapid deteriorating form of MS.
The symptoms someone has will depend on which parts of their brain and spinal cord are affected.
Common symptoms of MS include fatigue, sensory and visual problems, dizziness, pain, loss of muscle strength and dexterity, problems with walking, balance and coordination, muscle stiffness spasms and spasticity, difficulties with speech and swallowing, bladder and bowel problems, problems with memory, thinking, mood and depression and sexual problems.
MS is a condition which is very difficult to diagnosis as it can mimic other conditions.
It occurs most frequently in people aged between 20 and 40, although it can occur at any age, and is more common in women.
It is unpredictable so people living with MS can experience years of uncertainty. Some go on to lead a full and active life while others may endure disappointment, disability and loss.
Some drugs have been shown to reduce relapses and slow progression (1), however, as there is currently no cure for MS, it is vital that people get the correct care and support.
Hospice and palliative care
The National service framework for long term conditions, published in 2005 states: “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.” (2)
However, the document also recognises a “lack of recognition that these people may experience cognitive changes and that therefore these discussions need to take place earlier.”
Palliative care can improve quality of life even at diagnosis and throughout the disease progression so needs to be introduced much earlier. This is supported by a study published in 2010 (3) which found that people severely affected by MS showed improvement in many symptoms, including pain, with palliative care intervention.
It is therefore important that healthcare workers ensure that people with MS and other neurological conditions are able to access palliative care services when the need arises.
“If only I had known the hospice could have helped me”
When I worked as a specialist palliative care nurse at a hospice, a 44-year-old lady called Linda with primary 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.
Pain is a common symptom and affects around one third of people with MS due to direct nerve damage, muscle spasms or immobility.
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 does, which Linda could not tolerate. This regime is not a panacea for all, however, drawing from experience, knowledge and palliative guidelines (4) we were able to control Linda’s pain.
The hospice physiotherapist and occupational therapist reassessed Linda in her home environment 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.
Around 10 to 15% of people with MS become severely affected and have complex needs.
Although everyone is unique, the specialist palliative care team can anticipate some common problems which may occur, such as breathing and swallowing difficulties.
Anticipatory planning can be organised, such as artificial feeding or ventilation, along with proactive prescribing of non-oral drugs. Forward planning avoids unnecessary suffering and can prevent inappropriate hospital admission.
If the situation is difficult, patients can be admitted to the hospice for symptom control. Some people with MS are offered respite care to give carers a break. Some spend their last few days in a hospice where there are facilities for carers to stay too and remain involved in care if they wish.
For people who prefer to stay in their home, additional support services such as ‘hospice at home’ nurses and volunteers can offer extra support to help them achieve their wish.
Difficulty accessing palliative care
The information in this article supports the notion that person-centred palliative care is beneficial for people with MS at various stages of their illness.
However, in reality, as a member of the MS community, I have evidence that not everyone is aware that they can access palliative care, and those who are can sometimes have difficulty accessing this.
A recent report by the Irish Hospice Foundation and the Neurological Alliance of Ireland (5), found inequalities and deficiencies in the availability of palliative care for people with neurological illness in Ireland and stresses that people with neurological illnesses (including MS) need earlier referral to this multi-disciplinary service.
Healthcare providers can help by recognising those who require palliative care and directing them to the appropriate service.
While I acknowledge that resources may be limited, to ensure equality I feel we should lobby organisations such as the government and the NHS to ensure that relevant funding is made available.
- Castro-Borrero W, Frohman TC et al. Current and emerging therapies in multiple sclerosis: a systemic review. Therapeutic Advances in Neurological Disorders. 2012; 5(4):205-220.
- Department of Health. National Service Framework for long term conditions. 2005. Available at: https://www.gov.uk/government/publications/quality-standards-for-supporting-people-with-long-term-conditions [Accessed 23 April 2015]
- Edmonds et al. Palliative Care for People severely affected by MS: Evaluation of a novel palliative care service. Multiple Sclerosis Journal. 2010; 16(5):627-36.
- Gomm S, et al. Pain and Symptom Control Guidelines. 3rd ed. Manchester: Greater Manchester and Cheshire Cancer Network; 2011.
- Irish Hospice Foundation and Neurological Alliance of Ireland. Report into availability of palliative care for people with neurological illness. Ireland: Irish Hospice Foundation; 2014.