Press Release

Briefing on palliative care

21 April 2009

1. INTRODUCTION

1.1 Few conditions are as devastating as Motor Neurone Disease (MND). In the majority of cases it is rapidly progressive, always fatal and kills five people everyday in the UK. It leaves people locked into a failing body, unable to move, speak or eat normally. The intellect and senses usually remain unaffected. There are around 5,000 people living with MND in the UK. Half of people with the disease die within 14 months of diagnosis. There is no effective treatment.

1.2 The MND Association is the only national organisation supporting people affected by MND in England, Wales and Northern Ireland, with approximately 90 volunteer-led branches and 3,000 volunteers. The MND Association's vision is of a World Free of MND. Until that time we will do everything we can to enable everyone with MND to receive the best care, achieve the highest quality of life possible and to die with dignity.

1.3 The MND Association supports the Palliative Care Bill and believes that specialist palliative care should be available to everyone with MND in a setting and at a time of their choice.

1.4 However, many people with MND are unable to access the palliative care services they require. In a survey carried out by the Association in 2005, only 39% of people with MND had been referred to specialist palliative care services. In addition, there are unacceptable geographical variations in the quality of service provision and this can have a negative impact on the quality of life of people with MND and their families.

2. PALLIATIVE CARE FOR PEOPLE WITH MND

2.1 Availability in a range of settings: The Association believes that people with MND should be offered a choice of where they can access palliative care services. Because of the nature of the disease, people with MND may be unable to travel very far to access palliative care services. It is therefore important that these services are offered in a range of settings, including the person's own home. The Association is keen to see the expansion of 'hospice at home' services so that everyone with MND can be offered this service.

2.2 Availability from diagnosis: The timely provision of palliative care is very important for people with MND. Because symptoms may arise very quickly and survival may be short, palliative care should be offered soon after diagnosis. In addition, it is important that if possible discussions around palliative care take place before the person develops speech difficulties, to enable them to fully participate in discussions about their end of life care. Research carried out in 2003 found that only a quarter of palliative care services provided care to people with MND within 6 months of diagnosis and a third of palliative care services were only providing care in the 'terminal' phase of the disease.

2.3 Equality of access: Palliative care providers have historically focussed their services on people with cancer. However, it is important that other terminally ill patients, such as people with life-limiting non-malignant conditions, are given equal treatment. The Association is concerned that many hospices give preferential access to people with cancer, with some only admitting one person with MND at a time. Research carried out in 2003 found that 33% of palliative care services restricted the number of MND patients under their care at any one time and 6% did not provide care for people with MND at all. We recognise that people with MND place higher demands on staff time because of their complex care needs, but this should not prevent service providers from admitting them. It is also important that people with MND have equal access to community services. Access currently varies across the UK and is improving but there are still gaps in service provision. The Association believes that access to palliative care should be determined by clinical need not disease type.

2.4 Palliative care professional in the multidisciplinary team: It is important that a palliative care professional is a member of the multi-disciplinary team caring for someone with MND and that other members of the team are able to cross-refer patients to them.

2.5 Speed of response: The speed of progression of MND means symptoms may arise very quickly and services need to be able to react appropriately. However, this does not always happen and can be exacerbated by delays in payment for services, causing avoidable distress.

2.6 Communication and MND: Most people with MND experience difficulty speaking during the progression of the disease and this may be the presenting symptom. Some people with the disease may use communication aids such as Lightwriters. It is therefore important that clinicians understand the particular communication needs of people with MND and give them the time and the tools to communicate effectively. As stated in 2.1 it is important that discussions between the patient and clinician take place early in the course of the disease when the patient is still able to speak.

2.7 Patient-centred care: Although people with MND may have difficulty speaking, the vast majority have the mental capacity to be involved in decisions about their care. It is therefore important that they are at the centre of decisions about their care, particularly end of life care. In order to help people plan this in advance, the Association provides information on advance directives and we encourage people with MND to discuss end of life decisions with their family and key members of the multi-disciplinary health and social care team, so that their wishes are known. Palliative care professionals have a wealth of experience of discussing difficult issues and their involvement is particularly important at this time.

2.8 Carers: Caring for someone with a rapidly progressing fatal disease like MND is extremely demanding, both physically and emotionally. Coming to terms with the fact that a loved one is dying is difficult enough, but having to care for that person while they gradually lose the ability to do everyday tasks is extremely demanding. The intensity of the disease and the complexity of symptoms of MND are uniquely challenging for carers. Support for carers and families is therefore crucial. Carers should be seen as equal partners in care. They should have an assessment of their own needs and a wide range of timely information should be available to them in a variety of formats.

2.9 Lack of knowledge of MND: MND is not a well understood disease, even amongst some health care professionals. Some professionals shy away from treating people with the disease because of their lack of knowledge of MND. This can affect the availability and quality of palliative care offered to people with MND.

This issue is likely to grow as more people with MND use specialist clinical interventions such non-invasive ventilation (NIV) to assist breathing and percutaneous endoscopic gastrostomy (PEG) to assist nutrition. Some palliative care professionals have experience of caring for people using these interventions. It is important that all staff receive this specialist training.

2.10 Psychological/emotional care: People with MND often experience considerable psychological and emotional distress, both at diagnosis and as their symptoms increase and they progressively lose the ability to do everyday tasks. Palliative care professionals have expertise in providing such care so it is important that people with MND are referred to them early in the course of the disease.

2.11 Shortage of neurologists: The shortage of neurologists in the UK may mean that people with MND are not referred to palliative care services at the most appropriate time, as there may be a delay in follow-up appointments. We would like people with MND to be referred directly to palliative care services from members of the multi-disciplinary team so that a delay in neurology appointments does not prevent people with MND accessing palliative care when they need it.

2.12 Year of care Pathway: In 2008 the MND Association launched a Year of Care Pathway for MND. The Pathway sets out all the health and social care services someone with MND may need, including end of life care, and attaches a cost to each. It is designed to help commissioners plan and budget for MND services in their area. The Pathway was developed through a partnership between the MND Association, Wandsworth Primary Care Trust (PCT), Leeds PCT and Leeds Adult Social Care. We hope it will enable commissioners to commission appropriate end of life care for people with MND, which we believe should be initiated shortly after diagnosis.

2.13 End of Life Care Strategy: The MND Association warmly welcomed the publication of the End of Life Care Strategy in July 2008. We particularly welcomed the focus on everyone approaching the end of life (regardless of diagnosis), the emphasis on people having a choice of where they die and the ability to have rapid access to care if their condition deteriorates suddenly (a feature of MND). It is now paramount that the Strategy is effectively implemented.

2.14 National Service Framework (NSF) on Long-Term Neurological Conditions: The MND Association welcomed Quality Requirement (QR) 9 in the NSF on Long-Term Neurological Conditions, which sets standards for palliative care provision for people with neurological conditions. Within the QR there is a separate section on the special needs of people with rapidly progressing conditions. This section states how important it is that people with rapidly progressing conditions, such as MND, are referred early to palliative care services. The Association welcomes this but is concerned that the NSF is not being effectively implemented.

2.15 Gold Standard Framework (GSF) for Palliative Care: The aim of the GSF is to develop a practice-based system to improve and optimise the organisation and quality of care for patients and their carers in the last year of life. The Framework was originally developed for people with cancer but is being extended to include everyone with a life-limiting condition. The Association welcomes this and hopes it will lead to improved care for people with MND.

3. FURTHER INFORMATION ON MND

• MND is the name given to a group of related diseases affecting the motor neurones (nerve cells) in the brain and spinal cord. As the motor neurones die, the muscles stop working
• MND is a rapidly progressive and fatal disease that can affect any adult at any time. The cause of MND is unknown and there is no known cure
• Every day in the UK five people die of MND. It affects over 5,000 people in this country at any one time, with a prevalence of around 7 per 100,000
• On average it takes 17 months from first symptoms to diagnose MND. Half of those with the disease die within 14 months of diagnosis
• MND leaves people unable to walk, talk or feed themselves, but the intellect and the senses usually remain unaffected
• The only drug treatment licensed to treat the disease – riluzole – was recommended by the National Institute for Clinical Excellence in January 2001. It has shown to extend life by an estimated three to six months