Health and Social Care Bill

Memorandum submitted by Parkinson’s UK, the Motor Neurone Disease (MND) Association the Multiple Sclerosis (MS) Society, Epilepsy Action, the PSP Association, Sue Ryder Care, the UK Acquired Brain Injury Forum (UKABIF) and the Neurological Alliance (HS 55)

1) Background and introduction

1.1) Parkinson’s UK, the Motor Neurone Disease (MND) Association the Multiple Sclerosis (MS) Society, Epilepsy Action, the PSP Association, Sue Ryder Care, the UK Acquired Brain Injury Forum (UKABIF) and the Neurological Alliance [1] are charities working for people with neurological conditions. We share a number of concerns about how aspects of the Health and Social Care Bill could affect the people we represent. Therefore, for the convenience of the Bill Committee we are submitting a joint response.

1.2) The charity sector contributes a vast amount to health and social care. The work we do to support people with neurological conditions includes: contributing to local plans; providing advice, support and information; pump-priming specialist nurses and providing commissioning support through the work of Neurological Commissioning Support [2] .

1.3) Many of these charities are members of National Voices. We fully support their submission to the Bill Committee Strengthening Patient and Public Involvement in Commissioning and the suggested amendments. [3] These amendments are essential to ensure that the patient voice is at the heart of the NHS. Our previous submissions to consultations on the white papers leading up to this Bill emphasised the importance of strong accountability, patient and public involvement in commissioning and integrated care.

1.4) Rather than restate the points made in the National Voices submission, we would like to focus on additional issues of particular relevance for our organisations.

2) Low volume commissioning

2.1) The Bill as it stands (and indeed the white papers preceding it) do not stipulate clearly how GPs will commission for ‘low volume’ services.

2.2) The term ‘low volume’ has been used in the set of consultation documents Liberating the NHS and in the explanatory notes to the Health and Social Care Bill. However, no definition of the term has been provided. For example, neither the Bill nor the white papers preceding it give a definition of population size or what services could be classed as ‘low volume’. The coalition agreement did not include the term ‘low volume’, instead using the phrase ‘residual services’. It states: ‘The local PCT will act as a champion for patients and commission those residual services that are best undertaken at a wider level, rather than directly by GPs’.

2.2) Such a vague definition risks varied interpretation at a local level, which may lead to services falling through gaps, and deepening regional inequalities.

2.3) A huge number of patients use services which are termed ‘low volume’, and these services represent a significant proportion of NHS spend. A lot of neurological services need to be commissioned for a population size of 500,000 people. If a consortium only covers an area of 50,000, the number of people with neurological conditions will be too small to deliver a comprehensive service. Yet they are not rare enough to fall within specialised commissioning arrangements under the NHS Commissioning Board. This includes services such as a specialist neurological multidisciplinary team, comprising for example one or more specialist nurses, physiotherapists, speech and language therapists and occupational therapists.

2.4) A team of this kind, delivering high quality, cost-effective care could not be effectively commissioned by one small, locally focussed consortium. The Bill therefore needs to make adequate provision to ensure that consortia work together in order to deliver effective ‘low volume’ commissioning.

2.5) We therefore propose the following amendments for the consideration of the Bill Committee.

3) Amendments

3.1) Duty to involve patients groups in deciding the appropriate level at which to commission services (Secretary of State)

Amendment one

Section 11 Clause (4)

Page 7 line 28

After section (a) insert

(b) involve a range of groups representing patients and carers with expertise in the services to be affected/commissioned


As there is a lack of clarity about what constitutes ‘low volume’ services we think the voice of patients should be at the heart of deciding at what level services are commissioned. This is particularly relevant as the explanatory notes state that some ‘low volume’ services could be commissioned by the NHS Commissioning Board (Section 11 Clause 2)

3.2) Provision to publish guidance as to when consortia should commission jointly (Board)

Amendment two

Section 21 clause 14J

Page 29 – line 9

After subsection (a) insert

b) collaboration between consortia, including neighbouring consortia, for the purposes of joint commissioning.


This amendment would make provision for the NHS Commissioning Board to publish guidance to GP consortia on collaboration on commissioning for ‘low volume’ services. GPs often have limited knowledge and experience of these services and the conditions they apply to. GPs typically have only one or two patients with MS or Parkinson’s and may see just one or two patients with MND during their whole career. They will see patients with conditions like ataxia or progressive supranuclear palsy (PSP) even less frequently. [4] A report by the MS Society found that 30 per cent of GPs reported a lack of confidence in identifying MS patients. Therefore the NHS Commissioning Board should support GP consortia in this important area and the Bill should be amended to reflect this.

3.3) Duty to issue guidance on joint commissioning, including for ‘low volume’ services and to involve patients in this process (Board)

Duty to collaborate on ‘low volume’ commissioning where advised to do so by the Board (consortia)

Amendment three

Section 22 clause 14Q (2)

Page 31 line 23

After section (1) insert

(2) Arrangements must be made for two or more consortia to exercise commissioning functions jointly for ‘low volume’ services, if the Board advises that these services cannot be effectively commissioned by a particular consortium or consortia, based on factors such as population size.


This amendment would ensure that the NHS Commissioning Board retains oversight of how consortia commission ‘low volume’ services, such as specialist neurological multidisciplinary teams. It could also advise consortia to commission jointly, where they do not, individually, cover a large enough population size to make commissioning for these services effective (see 2.3 and 2.4 above.) As the Bill stands, there is a danger that while some consortia may cover a large enough population to commission effectively, other consortia could be too small but have no lead from the NHS Commissioning Board as to how to work collectively. Having no national oversight therefore greatly increases the risk of regional inequality in the level of ‘low volume’ services.

Amendments four to seven

Clause 22 Section 14V (1)

Add, subsection 1) a)

Such guidance must cover commissioning for "low volume services"

Add, subsection1) b)

The Board must involve a range of groups representing patients and carers with expertise in the services to be commissioned in the development of such guidance.

Clause 22 Section 14V (2)

Page 33 line 10

Delete ‘must have regard to’ and insert ‘has a duty to follow’

14V (2), subsection a)

Consortia must demonstrate to the Board that they have acted on their duty to follow such guidance as is published by the Board.


Section 22 Clause 14V explains how the Board will issue guidance on commissioning functions. As GPs have limited experience in this field (see 3.1 above) consortia will need strong guidance on commissioning for low volume services, and there must be an imperative for them to follow this guidance. Further, since Liberating the NHS: Legislative framework and next steps makes clear that the Board will "hold consortia to account for the quality outcomes they achieve" (4.52, page 60), consortia should demonstrate that they have followed guidance from the Board relating to delivering quality services.

To place patients at the heart of these decisions they should be involved in this guidance from the outset.

3.4) Duty to include ‘low volume’ commissioning in annual plans (consortia)

Amendment eight

Section 22 clause 14Y

Page 34 line 12

After section (2) insert

(3) The plan must explain how the consortium proposes to ensure that commissioning for low volume services will be done.


This amendment would encourage consortia take a strategic view of ‘low volume’ commissioning by ensuring this is covered in their yearly plan. It would also enable the Board to see from the beginning how the consortia plan to commissioning ‘low volume’ services. This enables the Board to take an overview of ‘low volume’ commissioning across the country.

Parkinson’s UK

Motor Neurone Disease (MND) Association

Multiple Sclerosis (MS) Society

Epilepsy Action

PSP Association

Sue Ryder Care

UK Acquired Brain Injury Forum (UKABIF)

Neurological Alliance

Neurological Commissioning Support (NCS)


February 2011

[1] The Neurological Alliance is the collective voice of 80 brain and spine charities, representing the 8 million people in England with a neurological condition. 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] Neurological Commissioning Support (NCS) is a joint initiative of the MND Association, the MS Society and Parkinson’s UK , offering consultancy advice on commissioning for services for the conditions represented.  It currently works with some PCTs and intends to work with commissioners under the new system – such as GP consortia, including by helping them to involve patients in the commissioning process. More in formation is available at

[3] This is also supported by Alzheimer’s Society, Asthma UK, Breakthrough Breast Cancer, Diabetes UK, National Voices, Rethink, and the Stroke Association

[4] Some of the 80 charities within the Neurological Alliance represent people with rare conditions.