As you may know, NHS England intend to cut the role of National Clinical Director for Adult Neurology from March 2016. We believe that this will be a serious blow to millions of people living with neurological conditions.
Nanette Mellor, The Brain Charity's CEO, has now joined with others to write to the Secretary of State for Health, Jeremy Hunt MP, urging a reversal of this short-sighted decision. We await his response.
In addition, a joint letter on the issue from the Neurological Alliance and its members, including The Brain Charity, was published in The Times newspaper on January 31st.
Here's what that letter said:
As representatives of the millions of people in England living with a neurological condition and those who care for them, we would like to express our deep dismay at NHS England’s decision to cut the role of National Clinical Director for neurology services, less than three years after it was instituted.
Once again, people with these complex and often severe conditions feel let down and neglected by the system. The NHS spends over £4 billion per year on neurology services, yet patients still face excessive waiting times and a postcode lottery in access to care. When 40% of patients wait for over a year to be diagnosed and 58% face difficulties accessing the specialist services they require, it is inexplicable that NHS England now intends to cut the only source of national clinical leadership for service improvement.
This short-sighted decision will harm the interests of patients and undermine the improvement initiatives that the National Clinical Director has led and coordinated. Furthermore, it reinforces the perception that people living with neurological conditions are a low priority constituency for the NHS. On behalf of patients, we urge NHS England to reverse this damaging decision.
Arlene Wilkie Chief Executive, Neurological Alliance
Adrian Hale, Chair, Trigeminal Neuralgia Association UK
Alice Doyle, Chief Executive, Brain and Spine Foundation
Amy Bowen, Director of Service Development, Multiple Sclerosis Trust
Amy Couture, Chief Executive, Hemihelp
Andrea West, Chief Executive, Batten Disease Family Association
Angela Geer, Chief Executive, Epilepsy Society
Andrew Kemp, Acting Chair, South West Alliance of Neurological Organisations
Barbara Babcock, Chair, Tranverse Myelitis Society
Bernard Elwen, Secretary, Multiple Sclerosis National Therapy Centres
Caroline Morrice, Chief Executive, Guillain-Barre and Associated Inflammatory Neuropathies
Cath Stanley, Chief Executive, Huntington's Disease Association
Countess Mar, Chair, Forward M.E.
David White, Chair, Cavernoma Alliance UK
David Wray, Chair, Swindon and Wiltshire Neurological Alliance
Fergus Logan, Chief Executive, PSP Association
Glenys Marriot, Chair, Cumbria Neurological Alliance
Guy Parckar, Chief Executive, Dystonia Society
Heather Wallace, Chair, Pain Concern
Heidi Travis, Chief Executive, Sue Ryder
Heidi Wilson, Chair, I Have IIH Foundation
Jamie Miller, Chair, Oxfordshire Neurological Alliance
Jane Hanna, Chief Executive, SUDEP Action
Jayne Spink, Chief Executive, Tuberous Sclerosis Association
Jean Waters, Chair, Gloucestershire Neurological Alliance
John Livingston, President, British Paediatric Neurology Association
John Morgan, Chair, Staffordshire Neurological Alliance
Karen Butcher, Chief Executive, CMT United Kingdom
Karen Walker, Chief Executive, Multiple System Atrophy Trust
Katherine Carpenter, Chair of the Division of Neuropsychology, British Psychological Society
Linda McDonald, Regional Organiser, Yorkshire and Humberside Association of Neurological Organisations
Lindsay Easton, Chief Executive, Brain Research Trust
Margaret Stewart, Chair, Northern Neurological Alliance
Matt O'Neil, Chair, Narcolepsy UK
Michelle Mitchell, Chief Executive, Multiple Sclerosis Society
Michelle Williamson, Trustee, IIH UK
Mikes Barnes, Chair, UK Acquired Brain Injury Forum
Nanette Mellor, Chair, The Brain Charity
Paul Allen, Chief Executive, Royal Hospital for Neuro-disability
Paul Lenihan, Chief Executive, Action Duchenne
Peter Cornell, Chair, Black Country Neurological Alliance
Phil Lee, Chief Executive, Epilepsy Action
Philip Johnson, Assistant Chief Executive, Brain And Spinal Injury Centre
Philip Smith, President, Association of British Neurologists
Preston Keeling, Chair, Lincolnshire Neurological Alliance
Ruth Ingledew, Chief Executive, Myaware
Sally Light, Chief Executive, Motor Neurone Disease Association
Sarah Lindsell, Chief Executive, Brain Tumour Charity
Simon Parritt, Chair, Polio Survivors Network
Sonya Chowdhury, Chief Executive, Action for M.E.
Steve Ford, Chief Executive, Parkinsons UK
Sue Millman, Chief Executive, Ataxia UK
Suzanne Dobson, Chief Executive, Tourettes Action
Ted Hill, Chief Executive, British Polio Fellowship
Theresa Dauncey, Chief Executive, The National Brain Appeal
Tom Isaacs, President, Cure Parkinson's Trust
Wendy Thomas, Chief Executive, Migraine Trust
In May 2016 we were disappointed to hear that the Department of Health had rejected calls to retain the position of National Clinical Director for Adult Neurology.
Arlene Wilkie, chief executive of the Neurological Alliance, commented: “Once again, the Government has sent a message that the needs of people with neurological conditions are simply not important enough to focus on. Rather than accepting the criticisms of the Public Accounts Committee, both the Department of Health and NHS England have attempted to deflect blame and evade responsibility. There can be no justification for discontinuing national clinical leadership for neurology when so many patients are not receiving the essential treatment, care and support services that they require.”