Health and Social Care (Re-committed) Bill

Memorandum submitted by the Neurological Alliance (HSR 27)

People with neurological conditions – the neglected eight million

1. About the Neurological Alliance

The Neurological Alliance is the collective voice of 80 brain and spine charities, representing the 8 million people in England with a neurological condition. [1] The Alliance campaigns for access to high quality, joined-up services and good information for every person diagnosed with a neurological condition, from their first symptoms, throughout their life. More information is available at

2. Quality care for people with neurological conditions

People with neurological conditions rely on a specialist multidisciplinary team of nurses, physiotherapists, speech and language therapists and others to maximise their independence and quality of life. The Bill proposes that these services be commissioned at a local level by clinical commissioning groups.

Our key concern is that some such groups will cover a relatively small population area, meaning that it will not be cost effective to commission services for less common conditions. Effective commissioning necessitates a population size of a minimum of 250,000 but ideally larger. [2] Otherwise, there are not likely to be enough people living with neurological conditions to make it efficient. Therefore, clinical commissioning groups covering a small population and working in isolation are unlikely to deliver the services that people with neurological conditions need or provide value for money for the public purse.

Therefore, we are calling on the Government to ensure that these groups work together where appropriate to achieve effective provision of specialist quality services. This would ensure that people with less common neurological conditions have access to the healthcare they need, wherever they live in England.

3. The Future Forum and the Government’s Response

We welcome the Government’s response to the Future Forum report and the changes it has made to the Bill. We believe the listening exercise has been productive and we support many of the Future Forum’s recommendations.

The Future Forum acknowledged concerns we raised during the listening exercise, relating to commissioning for less common conditions. However, the Government’s response did not satisfactorily address these concerns. We hope they will now be addressed as the Bill resumes its passage through Parliament.

4. Commissioning for less common conditions

The Future Forum report states:

"There was also concern about the future commissioning of services for less common conditions, such as Motor Neurone Disease, which require specialised support for a small number of patients". [3]

The report is referring to our argument that services for less common conditions will not be efficiently and cost effectively commissioned by clinical commissioning groups covering a small population size. (See paragraph 2. above.) The Government has previously referred to this issue as "low volume" commissioning and the Neurological Alliance therefore used this term in previous briefings [4] .

5. Our recommendations (1) – clinical commissioning groups must work together

The Government’s response to the Future Forum report does not, in our view, substantively address this problem. We believe the following changes are necessary in order to ensure that everyone with less common neurological conditions has access to the services they need:

· The Health and Social Care Bill must address the ‘strategic gap’ [5] in commissioning for less common conditions.

· The authorisation process for clinical commissioning groups must include assessment of how they will collaborate to commission services for less common conditions. This will make sure that clinical commissioning groups recognise the importance of collaborative working from the outset.

· Clinical commissioning groups must have a duty to work collaboratively to commission for less common conditions

· The NHS Commissioning Board must monitor, and where necessary enforce, commissioning of services for less common conditions.

· There should be an advisory group for neurology within the NHS Commissioning Board – in line with the Future Forum recommendation. [6]

These changes are necessary because without explicit statutory protection, combined with specific monitoring of the commissioning of less common conditions, neurology services will fall through the ‘strategic gap’. At clinical commissioning group level there is a real risk neurology will be overlooked. Not one pathfinder consortium is looking at neurology as a special area of interest. Added to this, many neurological conditions do not have a NICE guideline and are therefore extremely unlikely to have a quality standard under the new system, meaning there is no official statement of what constitutes quality care.

6. Our recommendations (2) – neurology networks and clinical senates

While the government response does not respond to calls for clinical commissioning groups working together, we welcome its support for clinical senates and networks. We support the Government’s view that these can help provide more integrated care, including for less common conditions. However, the following are necessary in order to deliver real improvements for people with neurological conditions:

· Neurology should be represented on each clinical senate in order to provide the necessary skills and leadership to assist clinical commissioning groups to commission effectively for neurology.

· Neurological networks should be funded and embedded throughout the NHS

· The Government should follow the recommendation of the Future Forum and look at the most effective forms of networks and spread best practice [7]

· The Government should provide support for existing networks to help them through the transition process

· The formation of clinical senates and networks should be a priority. They should be in place to support clinical commissioning groups when they start taking full responsibility for commissioning from April 2013.

Supporting evidence

There is evidence to support our argument that neurology networks can make a real difference to patient care. There are some excellent examples of neurological networks in England, though in some places they have struggled to get off the ground. Without proper support, guidance and funding from the Department of Health this situation is likely to remain, or possibly even deteriorate.

One of the most successful neurology clinical networks is in the North East. This network was funded and fully supported. It has worked with service users, carers, clinicians and social care to help develop a more integrated service – exactly the model that the Government support. It was the only funded neurological clinical network in the country. However, as is often the case with neurology, which seems low on many priority lists, this network is at risk because of changes to the NHS. Because of changes in staff and structures, as well as decreased funding, this network is now working with the cardio-vascular network to try and survive the transition process.

July 2011

[1] Full national members: Action for Dystonia, Diagnosis, Education & Research, Action for M.E., Alzheimer’s Society, Association for Spina Bifida & Hydrocephalus, Ataxia -Telangiectasia Society, Ataxia UK, Brain & Spine Foundation, Brain Research Trust, Brain Tumour UK, British Polio Fellowship, CMT United Kingdom, Cure Parkinson's Trust, Different Strokes, Dystonia Society, Epilepsy Action, Epilepsy Bereaved, FibroAction, Glenside Manor, Guillain-Barré Syndrome, Headway, Independent Healthcare Advisory Services, Joint Epilepsy Council, Matthew's Friends, MND Association, MS Society, MS Trust, Multiple System Atrophy Trust, Myasthenia Gravis Association, Narcolepsy UK, National ME Centre, National Tremor Foundation, National Voices, Neurosupport, Pain Concern, Parkinson’s UK, PJ Care, Polio Survivors Network, PSP Association, QEF Neuro Rehabilitation, Royal Hospital for Neuro-disability, Stroke Association, Sue Ryder Care, The Migraine Trust, Tourettes Action, Tranverse Myelitis Society, Trigeminal Neuralgia Association UK, Tuberous Sclerosis Association, UK Acquired Brain Injury Forum


[2] For many rarer neurological conditions a significantly larger population is more realistic for effective commissioning. For example, a population of 500,000 will only include 30 people with motor neuron disease.

[3] Clinical advice and leadership: A report from the NHS Future Forum. P.10, 2.11 Available at the Department of Health website:

[4] The term ‘low volume’ has been used in the set of consultation documents

[4] Liberating the NHS and in the explanatory notes to the Health and Social

[4] Care Bill.

[5] Clinical advice and leadership: A report from the NHS Future Forum. P.10, 2.12

[6] Clinical advice and leadership: A report from the NHS Future Forum. P.16, 3.16

[7] Clinical advice and leadership: A report from the NHS Future Forum. P.12, 2.27-2.29

Prepared 11th July 2011