Health CommitteeWritten evidence from the MND Association (LTC 25)
Summary
The ongoing implementation of the NHS reforms makes assessing the NHS’s capabilities to provide care for people with long term conditions challenging; in particular, commissioning services for people with long term neurological conditions is not currently the clear responsibility of either CCGs or NHS England.
Unplanned admissions to hospital of people with long term conditions have risen above the NHS average, despite an increase in funding; this appears to be the end result of manifold problems with providing care for people in their own homes.
The design and commissioning of services for people with long term conditions is a longstanding problem within the NHS, which prompted the establishment of Neurological Commissioning Support and other similar organisations.
1. Introduction
(i) Few conditions are as devastating as motor neurone disease (MND). It is rapidly progressive in the majority of cases, and is always fatal. People with MND will, in varying sequences and combinations, lose the ability to speak, swallow and use their limbs; the most common cause of death is respiratory failure. Most commonly the individual will remain mentally alert as they become trapped within a failing body, although some experience dementia or cognitive change. There are about 5,000 people living with MND in the UK. Half of people with the disease die within 14 months of diagnosis. There is no cure.
(ii) MND is therefore unusual for a long term condition: it is not a disease with which someone typically lives for a substantial period of time; its severe and unpredictable nature makes self-management challenging, and requires the regular involvement of large numbers of health and social care professionals; and therapies to extend life and reduce symptoms are limited in both number and effectiveness.
(iii) Furthermore, this is a difficult time at which to assess the capacity of the NHS and social care system to meet the needs of people with long term conditions. While most of the NHS reforms in England came into effect in April, the reforms to specialised commissioning, which will provide services to many people with LTCs are not due to come into effect until October.
(iv) At present it is unclear which services for people with MND, and people with other neurological conditions will be commissioned on a specialised basis by NHS England, and which are to be the responsibilities of CCGs. The draft service specification published for consultation in December by NHS England suggested a radical new model in which all neurology services, including community services that had been widely expected to remain with CCGs, would be commissioned on a specialised basis. However, this has yet to be confirmed as definite (and indeed seems unlikely to be, as NHS England’s commissioning budget is almost certainly too small to pay for such a large range of services): while we await clarity on specialised commissioning, some CCGs appear to have taken note of the proposal and not commissioned any neurology services at all. Currently therefore people with long term neurological conditions appear to be nobody’s responsibility. With the new system still just over a month old, the consequences for the services that people with MND rely on have yet to become clear.
2. Treating more People Outside Hospital
(i) We have long urged that services for people with MND be improved in order to be more preventative in character. With appropriate support, including home modifications and respite care, people with MND can usually be cared for most appropriately in the home. Yet the National Audit Office’s report “Services for people with neurological conditions” of December 2011 showed that unplanned admissions of people with MND to hospital have been rising at above the rate of increase for the NHS as a whole (31% from 2004–05 to 2009–10 compared to 20%), despite a 37% real-terms increase in annual health spending on neurological services between 2006–07 (£2.1 billion) and 2009–10 (£2.9 billion). More effective investment in caring for people with MND in the home would save the costs of these growing numbers of hospital admissions.
(ii) The problems reported by people with MND in respect of their support at home are myriad. A lack of care plans, integrated care or specialist nurses may be the issue; alternatively, respite care may not be available, placing huge burdens on regular carers; community support workers (nurses or social workers) may not be trained in helping people to manage non-invasive ventilation (NIV) or a gastrostomy (PEG, PIG or RIG); a stay in hospital to fit a PEG, for instance, might be prolonged by the absence of a social care package to allow the person to be discharged safely; specialised equipment for mobility, communication and environmental control may be provided or modified far too slowly, leaving the individual at risk, for instance, of falls. Provision of all of these things is hugely variable across England, although the low prevalence of MND and the highly localised nature of provision makes quantifying the impact of any individual one of these very hard; the disturbing rise in unplanned hospital admissions already noted remains the best indicator that there are problems.
3. Assistance Available to Commissioners
(i) We believe that there are long-standing problems with the design of services to support community-based care for people with long term neurological conditions. Alongside the MS Society and Parkinson’s UK we founded Neurological Commissioning Support (NCS) to provide exactly this type of support to NHS commissioners. Since then, charities in several other disease areas have indicated their intention to establish equivalent services. It must be emphasised that NCS was established as a result of failure by the NHS to commission services for people with long term neurological conditions of a sufficiently high quality. That said, NCS can only work where they have been commissioned to work; it cannot support every part of the NHS at the same time.
(ii) Additionally, the MND Association’s Regional Care Development Advisers support commissioners to design and commission appropriate services. However, with 22 RCDAs in England, we cannot provide in-depth support to all 211 CCGs.
(iii) We do not have information about the abilities or offerings of the new Commissioning Support Units (CSUs) in respect of neurology.
4. The Patient as a Person, not a Condition
(i) It is a positive development that the view that a patient should be seen as an entire person and not merely as a single diagnosis has become an orthodoxy in health policy. We would however suggest one caveat: it risks overlooking the significance of a catastrophic diagnosis such as MND, where in all but the rarest cases the fact that a person has MND is the single most important piece of information about them, from a care perspective. A failure to grasp the significance of the diagnosis is highly likely to lead to inadequate care.
5. Implications of the Ageing Population
(i) Although any adult can develop MND, it is more common in older people. As the population ages, we can therefore expect to see more people with MND. We have estimated that there will be an increase in numbers of people living with MND of 27% from 2012 to 2020. This would bring the figure to approximately 6,350.
8 May 2013