Briefing on palliative care and MND

Briefing on palliative care and MND

1. Introduction

1.1 The MND Association believes that specialist palliative care should be available to everyone with MND in a setting and at a time of their choice.

1.2 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. Specific issues related to palliative care

2.1 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 discussions around palliative care take place before the person develops speech difficulties, to enable them to fully participate in discussions about their care.

2.2 Equal access: Hospices have historically been funded by cancer charities so services have focussed on people with malignant disease. However, it is important that other services users, 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. We recognise that people with MND place higher demands on staff time because of their complex care needs, but this should not prevent hospices from admitting them. The Association believes that access to palliative care should be determined by clinical need not disease type.

Over the last couple of years there have been a number of Government announcements regarding funding allocated to palliative care. However, the funding has been focussed on services for people with cancer and it seems that little has been invested in capacity for people with non-malignant terminal diseases.

2.3 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.

2.4 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 Geographical variation: The availability and quality of palliative care for people with MND varies significantly throughout the . Even between hospices, access to specialist palliative care for people with MND can vary considerably. A survey carried out in 2000 found that many hospices only provide respite care or care in the later (terminal) stages of the disease. A small number of hospices are more closely involved in the care of people with MND from early in the disease progression and even fewer are involved from diagnosis.

2.7 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.

2.8 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.

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 positive pressure ventilation (NIPPV) to assist breathing and percutaneous endoscopic gastrostomy (PEG) to assist nutrition. Palliative care professionals will therefore need specialist training in using these interventions.

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 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.

2.12 National Service Framework (NSF) on Long-Term Neurological Conditions: The MND Association welcomes 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 10 year timescale for implementing the NSF is too long for people with MND.

2.13 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.