Brain and spine services now

Brain and spine services now Pete Scott, Epilepsy Action Alexandra Crampton, Muscular Dystrophy Campaign Anjuli Veall, Parkinson’s Disease Society Neurological Alliance AGM, 24 November 2009

What is epilepsy? • Tendency to have recurrent seizures. • Over 40 different types of seizure. • 456,000 people in the UK.

Time for change (2009) • Survey of all primary care and acute trusts in England. • Patient survey.

Wasted Money, Wasted Lives (2007) • 69,000 living with unnecessary seizures. • 400 avoidable deaths each year. • 74,000 taking drugs they do not need. • £189 million needlessly spent each year.

A question of expertise • Only 51 per cent of ATs confirmed they employ a consultant neurologist with a special interest in epilepsy. • 24 per cent did not even report employing a consultant neurologist. • Over half of ATs (60 per cent) and PCTs (64 per cent) do not have an epilepsy specialist nurse.

Transition services and care plans • Only 36 per cent of ATs and 33 per cent of PCTs have transition services. • Only 13 percent of respondents to the patient survey said they have a care plan.

In the waiting line • 90 per cent of trusts do not meet the guideline waiting times for people with suspected epilepsy. • People in some cases had to wait between 17-24 weeks.

Filling the information void • 64 per cent of PCTs provided data for their adult epilepsy population. • Only 18 per cent of PCTs knew how many children had epilepsy in their area.

Key recommendations • Appoint a National Clinical Director for epilepsy. • Ensure recruitment and training of sufficient epilepsy specialist consultants and epilepsy specialist nurses. • A formal review of the implementation of the NICE epilepsy guidelines.

Resulting work • A parliamentary launch. • Adjournment debate and Parliamentary Questions. • Early Day Motion 441. • National Epilepsy Week lobbies. • The minister’s letter to all SHAs. • Commissioning conference.

Government response “....a number of reports in recent years have covered epilepsy services.......... They all highlighted the fact that services continue to fall far short of the standards that people with epilepsy have a right to expect—and I agree that services are still not good enough.” Ann Keen MP, Parliamentary Under-Secretary of State for Health, 24 February 2009.

What next – future actions • Continued use of the report as a source of evidence. • Local branches continue to carry the message to local MPs and officials. • ‘Roundtable’ discussions. • Time for Change 2010/11?

APPG Parkinson’s Disease • Formed 2008 • Chair – Baroness Gale • Vice Chairs - Mark Hunter MP, Baroness Finlay of Llandaff, Anne Milton MP • Treasurer - Jeremy Browne MP • Secretaries - Madeleine Moon MP, Paul Burstow MP, Lord Brooke of Sutton Mandeville

APPG Parkinson’s Disease – Inquiry into inequalities in access to services • Why hold an Inquiry? • Evidence from PDS members’ survey • Aims and objectives • Remit • APPG Panel members • Evidence received

Parkinson’s Disease Society • About Parkinson’s disease • Parkinson’s Disease Society • PDS and the APPG PD • PDS Fair Care for Parkinson’s campaign

Please mind the Gap – Parkinson’s services todayAPPG Parkinson’s Disease report - outcomes • Inequalities in services: • Nurse specialists, carers’ support, allied healthcare professionals, social care • Lack of integrated care • Lack of preventative measures • Challenges for people living in care homes and from black and minority ethnic groups

Please mind the Gap – Parkinson’s services todayAPPG Parkinson’s Disease report - outcomes • Barriers to delivery of high quality services: • NICE guidelines implementation • Leadership for neurological services • Policy making and long term conditions • Lack of integrated service planning and commissioning • Lack of awareness of cost effective care • Little understanding of Parkinson’s

Please mind the Gap – Parkinson’s services todayAPPG Parkinson’s Disease report - outcomes • Impact of other Government policies: • Payment by Results – impact on access to secondary care • Payment by Results – impact on continuing care. • 18 week target – impact on access to ongoing specialist care.

Please mind the Gap – Parkinson’s services todayAPPG Parkinson’s Disease report - recommendations • Effective monitoring of Parkinson's services • Providing effective national and local leadership for Parkinson's services • Review the health and social care workforce to inform national and regional planning decisions

Government and Opposition response Government commitments: • Ann Keen MP: people with Parkinson’s “deserve the right to access to the essential services they need”. • Mid term review • Letter to SHAs • EDM • PM acknowledgement • Conservatives and NICE Guidelines

Muscular Dystrophy Campaign • The leading UK charity focusing on all forms of muscle disease. • Founded in 1959, the Muscular Dystrophy Campaign funds vital research, provides and supports care services and also gives information, advice and direct help to individuals living with these conditions. • Also campaigns for access to high quality health and social care services.

The Walton Report Between December 2008 and July 2009 the All Party Parliamentary Group for Muscular Dystrophy conducted a national inquiry into access to specialist neuromuscular care.

The Walton Report • Published August 2009: • Named after Lord Walton of Detchant:

Neuromuscular conditions • Muscular dystrophy and related neuromuscular conditions are rare and very rare conditions which affect 1 in 1000 people in the UK. • They cause muscle wasting and weakness and are devastating for families and patients • The conditions can be life-limiting and/or cause severe disability

Access to specialist care: • MDC 2008 survey: 50% people with muscle disease have no access to a specialist neuromuscular consultant • 2/3 PCTs in England are failing to support a muscle clinic for either adults or children Access to essential, life-extending specialist neuromuscular care is limited across the country and patient access is often just simply dependent on where they happen to live

Access to specialist care: • There are no cures but specialist care increases life-expectancy and improves quality of life. • As these are rare and very rare conditions, services should be commissioned and planned on a regional basis by each of the Specialised Commissioning Groups

Transition services • MDC Patient Survey: 60% of people with muscle disease rated their transition from childhood to adult services as either poor or very poor. • Essential services, such as physiotherapy, are often immediately withdrawn between the ages of 16-18. • Walton Report calls for a named transition coordinator for each young person moving from paediatric to adult services.

Neuromuscular Care Advisors • Only 18 Neuromuscular Care Coordinators for the 60,000 people living with muscle disease in the UK. • 8 of these posts vulnerable - reliant on MDC funding • The Walton Report states: “Investment in these posts is cost-effective as they have been shown to save consultants’ time, reduce emergency admissions and re-admissions, reduce hospital stays and coordinate care locally” and recommends that a national network of some 60 Care Coordinator posts is established within 5 years.

NICE guidelines: • There is currently no NICE guideline for muscular dystrophy or related neuromuscular conditions. • The Walton Report states that this: “would be of great help in improving access to specialist care” and Recommendation 7 of the report calls on NICE to put in place a Clinical Guideline for Duchenne muscular dystrophy to help drive up standards and also give patients and families a clear understanding of the standards of care to which they are entitled.”

Research: • Too few centres in the UK with the infrastructure to support trials for neuromuscular conditions – despite importance of patient involvement in clinical trials • Urgent action to improve care and treatment for patients will also help to develop additional tertiary and secondary centres with the capacity to participate in clinical trials.

Social Care: • Report also highlighted stark failings in social care and a lack of the support for independent living • Accessing higher and further education, and employment, home adaptations, and public transport • Called for cross-governmental systematic review of social care support for people living with a neuromuscular condition by September 2010.

Government response • The findings have been discussed in the Lords and the Commons with Health Minister Ann Keen stating that the Walton Report: “highlights the shortcomings in existing services and makes it clear that we need to do more to improve services for people living with muscular dystrophy.”

Call for action: • 17 recommendations for action to improve access to specialist care, and to build networks of sustainable, multidisciplinary specialist neuromuscular services, with strong research links across the country. • The Muscular Dystrophy Campaign are continuing to work with the APPG and regional Specialised Commissioning Groups to ensure that all people with muscle disease have access to the essential specialist care which improves quality of life and can extend life expectancy

Call for action • Campaign to highlight that fact that these rare, multi-system conditions do not sit easily in any of the usual NHS boxes: • They require interventions and support from genetics services, from paediatrics, from rehabilitation medicine and from specialist adult neurology services. • The complexity requires a multidisciplinary team response with a focus on building specialist neuromuscular services at the regional/country level

Common themes • Leadership • Key workers/nurse specialists • Review • NICE • Need to improve integration • Economic Benefits

Brain and spine services now