Health and Social Care Bill

Memorandum submitted by the National Autistic Society (HS 63)

The National Autistic Society (NAS) is the UK’s leading charity for people affected by autism. We have around 20,000 members and over 100 branches, who are at the heart of what we do. We provide a wide range of advice, information, support and specialist services to 100,000 people each year. A local charity with a national presence, we campaign for lasting positive change for people affected by autism, and empower local people to influence change they will experience at a local level.

Healthcare and autism

Autism is a serious, lifelong disabling condition that affects the way a person communicates with, and relates to, other people. It is a spectrum disorder which affects each individual in different ways. Some people with autism are able to live independent lives with little support, whilst others need specialist support throughout their lives. Around 1 in 100 have autism – over 500,000 people in the UK.

People with autism routinely struggle to access the services they need; consequently outcomes for both children and adults with autism are poor:

i. 71% of children with autism also have one or more mental health problems [1] , and yet our research shows that CAMHS are failing to improve the mental health of two thirds of children who access their services [2] .

ii. A third of adults with autism report that they have experienced severe mental health problems because of a lack of support. [3]

iii. People with autism are also often disadvantaged in accessing health services as their needs are not properly recognised and understood by professionals. Indeed, in a recent survey 80% of GPs told the National Audit Office that they needed additional guidance and training to effectively manage patients with autism. [4]

We have concerns about elements of the proposals in the Health and Social Care Bill, but also see them as an opportunity to address long standing inequalities. This brief highlights a number of the main areas of concern and proposes a number of solutions to ensure this opportunity can be maximised for people with autism and their families.

We also support Mencap’s and EDCM’s submissions, particularly where they concern tackling inequalities and improving cooperation between Health and Wellbeing Boards, "free-schools" and academies.

Summary

· The NAS is concerned that with the removal of Children’s and Young People’s Plan the needs of children with disabilities - and in particular those with autism - will not be accounted for when planning services locally.

· The NAS believes that, although Joint Strategic Needs Assessment and Joint Health and Wellbeing Strategies are valuable tools, this Bill needs to ensure Health and Wellbeing Boards recognise and plan for meeting the often complex needs of children and adults with disabilities.

· The Health and Social Care Bill proposes to amend the Adult Autism Act 2009 to include GP commissioning consortia. The NAS believes that the Adult Autism Act should also be amended to include Health and Wellbeing Boards.

· The NAS believes that this Bill needs to be much clearer on the commissioning of specialist services, such as specialist autism teams.

· The NAS would like the committee to raise a number of questions regarding "Any Willing Provider", particularly regarding how it will affect other statutory services.

Membership of Health & Wellbeing Boards (HWB)

· Education

Many children with autism have complex needs and require support from social services, education, health and other agencies. Where services are not co-ordinated, children may undergo tens of assessments, support can be delayed by the numerous referral routes they need to take, and greater strain is placed on parents who have to take on the burden of co-ordinating services themselves. By enhancing co-operation and ensuring that local services are coming together to plan for the needs of their local population, bureaucracy can be reduced, services can be streamlined and support to meet children’s needs can be put in place quickly, potentially saving costs in the long term.

The original draft Autism Bill [5] contained clauses to help planning at a local level for children with autism. During the passage of the Bill through Parliament, sponsored by the Rt Hon Cheryl Gillan MP with strong support from across all the main political parties, the Government committed to ensuring that the challenge of co-operation and local planning would be overcome through Children and Young People’s Plans.

The NAS was therefore very disappointed when in July, the Government announced plans to revoke the requirements to prepare and publish Children and Young People’s Plan and the associated regulations and guidance. The removal of duties on schools to co-operate and to have regard to the Children’s and Young People’s Plans currently in the Education Bill is also very worrying (clauses 30 and 31).

However, there is a real opportunity in this Bill to ensure that the new NHS landscape includes mechanisms for ensuring that the needs of children with complex needs, such as autism, are recognised and met at a local level. We strongly believe that requiring a senior person responsible for SEN and disability to sit on Health and Wellbeing Boards would help to ensure that the needs of those disabled children will be met.

Currently, the Health & Social Care Bill states that:

Clause 178 Establishment of Health and Wellbeing Boards

(1) A local authority must establish a Health and Wellbeing Board for its area.

(2) The Health and Wellbeing Board is to consist of:

a) subject to subsection (4), at least one councilor of the local authority,

b) nominated in accordance with subsection (3),

c) the director of adult social services for the local authority,

d) the director of children’s services for the local authority,

e) the director of public health for the local authority,

f) a representative of the Local Healthwatch Organisation for the area of

g) the local authority,

h) a representative of each relevant commissioning consortium, and

i) such other persons, or representatives of such other persons, as the

local authority thinks appropriate.

The NAS would like the committee to consider adding:

j) a senior official responsible for special education needs and disabilities as appointed by the local authority

This amendment would also ensure that the reforms soon to be taking place because of the SEN Green Paper are fed directly into the emerging NHS landscape and, as such, providing the much needed joining up of statutory services.

However, reforms to the education system mean that increasingly schools will become more independent of local authorities. Therefore, further consideration is needed about how these schools can input into local planning, particularly for those with complex needs. We support EDCM’s briefing on this issue and urge the Committee to consider their probing amendment.

· Autism Partnership Boards

In passing the Autism Act 2009, parliamentarians recognised that there were significant challenges for adults with autism in accessing the support they need from health and social services.

Fulfilling and Rewarding Lives: the strategy for adults with autism in England that was published as a result of the Act recommended establishing local autism partnership boards. These boards are key to overseeing the planning and commissioning of local services for adults with autism and overcoming some of the structural barriers facing adults with autism, as they try to access services. There are a large number of boards set up across England already. Over 80% of local authorities in the South West for example have established such boards, the members of the Greater Manchester Autism Consortium have had autism partnership boards for over 10 years (called autism services development groups or ASDGs) and a vast number have been established across the rest of England. The experience of our regional teams is that local authorities in particular see the value in these Boards and good practice local authorities are keen to set them up where they are not already in place.

These Boards are also crucial for involving adults with autism and parents/carers in the planning of services, reflecting the Government’s agenda for ensuring "Nothing About Us, Without Us".

Therefore, a further addition to the above would be to add into clause 178 the below:

k) a representative from an autism partnership board

Robust data

Although the NAS welcomes the Bill’s focus on outcomes, our concern is that because very little information is collected on autism it is almost impossible for the outcomes of this vulnerable group to be judged on real tangible data. This, in turn, will impact the speed with which reform is needed and the practical day-to-day commissioning of services.

We are aware that the Government has recognised this potential problem:

"The Government is aware that current data and data collections cannot adequately identify certain groups at present, such as people with a disability, and particularly those with learning disabilities. Indeed, the NHS Outcomes Framework makes it clear that people with learning disabilities are a particular group for whom we need to be able to better measure outcomes, and compare these with the rest of the population. As the framework evolves over time, outcome indicators will be refined with a view to being able to more fully measure and record health outcomes for all groups wherever it makes sense to do so."

Liberating the NHS: Legislative framework and next steps (15th Dec, 2010)

We welcome the Government’s recognition of this, although we would argue that while data on people with a learning disability is poor, data on autism is even worse . Therefore, it is crucial that data collected as part of the outcomes frameworks can be broken down by multiple disabilities i.e. a child has autism, epilepsy and depression. As such, the NAS would like to support Mencap’s suggested amendment on this issue.

In addition, however, we would urge the committee to pay specific attention to Government’s plans regarding Joint Strategic Needs Assessments (JSNA) and Joint Health and Wellbeing Strategies.

· Joint Strategic Needs Assessments (JSNA)

In order to plan effectively, local services need to know how many people there are with autism in their area and what their needs are. It is the Government’s vision that the key tool for assessing this at a local level is the ‘Joint Strategic Needs Assessment’ (JSNA).

The substantial lack of data on autism means that local authorities and PCTs find it difficult to plan effectively. The NAS strongly supports a needs based approach to commissioning, however, at present there are no references to autism prevalence in any of the statistical sources included in the JSNA core dataset. [6] Indeed, just 20% JSNAs even mention autism, let alone ensuring services are planned through this process. [7]

Lewisham: Data collection and local assessment of need

Local and national campaigning, along with the authority’s adult social care modernisation programme, have been drivers for Lewisham to conduct a detailed needs analysis for people with autism, with a specific focus on those with high functioning autism and Asperger syndrome who may fall between learning disability and mental health services. Lewisham used a mixed method, in-depth approach in gathering quantitative and qualitative data, matching the methods to the individuals and using specialist input.

The quantitative analysis pulled together data from statutory and voluntary partners and compared this to the national prevalence estimate to establish local prevalence and profile the future adult population with high functioning autism. This was used alongside qualitative data to predict future service capacity and understand the kind of support resources needed. Face-to-face interviews with learning disability services, mental health teams and the voluntary sector also revealed the need for a clearer pathway to diagnosis, information and assessment for social care services.

The authority profiled the gender, age and ethnicity of those identified, 58% being of non-white ethnic origin, most being male between the ages of 25 and 35, which will inform a service response. The aim of the qualitative research was to explore the particular local impacts on this group of people within the social and economic context of Lewisham. A specialist conducted semi-structured in-depth interviews which encouraged people to speak freely on a range of topics using themes where they were appropriate to the participant. A thematic analysis identified key needs including practical life skills, social and emotional skills, education and employment, housing, and support for family and carers.

Lewisham’s final report was made public in spring 2009. This analysis then fed into the JSNA, the development of transition services, and other commissioning strategies such as Supporting People.

Currently, the Health & Social Care Bill states that:

Part 5 – Public involvement and local government

Chapter – 2 Local government

176 Joint strategic needs assessments

(6) After subsection (8) insert –

"(8A) In preparing an assessment under this section, the responsible local authority or a partner commissioning consortium may consult any person it thinks appropriate

The NAS would like the committee to consider adding:

"(8D) must have regard for the needs of all disabled children and adults"

· Joint Health and Wellbeing Strategies (JHWS)

Clause 177 of the Bill imposes a duty on local authorities and commissioning consortia to produce a Joint Health and Wellbeing Strategy (JHWS). Given the complexity of planning and commissioning services for people with disabilities, who often require support from multiple agencies, it is essential that health bodies and local authorities use these strategies to ensure that they have a clear plan to meet complex needs and tackle health inequalities.

Furthermore, all NHS bodies and local authorities are required to comply with the Equality Act 2010, meaning that all NHS and social care organisations have a general duty to:

· to eliminate unlawful discrimination, harassment and victimisation

· to advance equality of opportunity between different groups

· to foster good relations between different groups.

Amending the bill as outlined below has the potential to ensure that each area plans to meet these needs as well as their duties under the Equality Act.

Currently, the Health & Social Care Bill states that:

Part 5 – Public Involvement and local government

Chapter 2 – Local government

Clause 177 Joint health and wellbeing strategies

After section 116 of the Local Government and Public Involvement in Health Act 2007 insert -

"116A Health and social care: joint health and wellbeing strategies:

(1) This section applies where an assessment of relevant needs is prepared under section 116 by a responsible local authority and each of its partner commissioning consortia.

(2) The responsible local authority and each of its partner commissioning consortia must prepare a strategy for meeting the needs included in the assessment by the exercise of functions of the authority, the National Health Service Commissioning Board or the consortia ("a joint health and wellbeing strategy").

(3) In preparing a strategy under this section, the responsible local authority and each of its partner commissioning consortia must, in particular, consider the extent to which the needs could be met more effectively by the making of arrangements under section 75 of the National Health Service Act 2006 (rather than in any other way).

(4) In preparing a strategy under this section, the responsible local authority and each of its partner commissioning consortia must have regard to the mandate published by the Secretary of State under section 13A of the National Health Service Act 2006.

(5) The responsible local authority must publish each strategy prepared by it under this section.

(6) The responsible local authority and each of its partner commissioning consortia may include in the strategy a statement of their views on how arrangements for the provision of health-related services in the area of the local authority could be more closely integrated with arrangements for the provision of health services and social care services in that area.

(7) In this section and section 116B-

(a) "partner commissioning consortium", in relation to a responsible local authority, has

the same meaning as in section 116, and

(b) "health services", "health-related services" and "social care services" have the same

meanings as in section 179 of the Health and Social Care Act 2011.

The NAS would like the committee to consider adding:

(8) In preparing a strategy under this section, the responsible local authority and each of its partner commissioning consortia must consider the extent to which the needs of all disabled children and adults will be met.

Autism Act

The Autism Act 2009 puts two key duties on the Government. The first was to produce a strategy on services for adults with autism. This was published in March 2010 (www.autism.org.uk/dhstrategy). The second was that statutory guidance for local authorities and local health bodies had to be published by the Secretary of State for Health by the end of 2010. The Act stated that the aim of this guidance was to secure implementation of the strategy.

On 17th December, 2010, the statutory guidance was published. This guidance sends a clear message that local authorities and the NHS must improve:

· training for their staff

· identification and diagnosis of autism in adults

· planning of services for people with autism, including the transition from child services to adult services

· local leadership

As this guidance is statutory, local authorities and NHS bodies must follow the guidance when it is relevant to them and, unless a good reason can be given, can be challenged through the courts.

Currently, the Health & Social Care Bill states that:

Schedule 5 – Part 1: amendments of other enactments

Autism Act 2009 (c. 15)

Clause 72 In section 4 of the Autism Act 2009 (interpretation), in subsection (1), in the definition of "NHS body"-

(a) omit paragraph (a),

(b) omit paragraph (b), and

(c) before paragraph (d) insert-

"(ca) the National Health Service Commissioning Board;

(cb) a commissioning consortium;".

The NAS warmly welcomes the amendments proposed to the Autism Act and on ensuring that GP commissioning consortia have a duty to implement the statutory guidance. We would also, however, suggest that Health and Wellbeing Boards are put under a similar duty:

(cc) health and wellbeing boards:"

The NAS believe this is an essential amendment as it would place a requirement on Health and Wellbeing Boards to coordinate their actions with the autism lead and make sure that their work is joined-up.

Although most local authorities will ensure this happens, we think it is important to clarify this and make sure that the autism strategy and statutory guidance are being taken forward in every local authority.

Clearly, although these boards are not commissioners in the sense of the Autism Act 2009 they will have a vital strategic role in the planning of services and, as such, should be bound by the ambitions set out in the adult autism strategy as well as the statutory guidance.

Further to this, the statutory guidance states that each local area should put in place a pathway to diagnosis. To help secure this requirement, the statutory guidance also states that:

· "Each local authority should appoint a lead professional to develop diagnostic and assessment services for adults with autism in their area. This should be done in conjunction with the Local Strategic Partnership."

With the demise of Local Area Agreements and the creation of health and wellbeing boards, many Local Strategic Partnerships (LSPs) are reviewing how they work and if they will continue. In this context, it would seem logical that Health and Wellbeing Boards accept these responsibilities, not least because a diagnostic pathway will primarily consist of clinical staff.

Commissioning specialist teams

Research conducted by the National Audit Office into public spending on autism [1] found alarming gaps in training, planning and provision across a range of services. One of the best ways to solve this is to establish a specialist autism team within every local authority area. The adult autism strategy, Fulfilling and rewarding lives, recognised that where things were working well in a local area this was often as a result of the development of such a team. It recommended that local services look at the models of teams that have been developed and consider developing one locally.

Furthermore, the NAO found that if such teams are established there is a potential to save money. They estimated that if local services identified and supported just 4% of adults with High Functioning Autism and Asperger Syndrome the outlay would become cost neutral over time. In addition, they found that if they did the same for just 8% they could save the Government £67 million per year. The Liverpool Asperger Team, which is the longest-standing specialist Asperger service, reports identification rates of 14%. 4% therefore seems a very achievable figure for newly established autism teams, thus achieving a cost-neutral level of service is an entirely realistic prospect.

Although an initial cost with identification will be placed on the NHS – estimated to be around £28m for an eight per cent identification rate – the saving for local authorities would potentially be around £105m [2] . With health and social care being more closely integrated – because of the NHS reforms – this amounts to real savings for the NHS in the medium to long term.

There is a concern, however, about how such teams will be commissioned and funded in the future. Currently the Bill sets out two methods by which these services would be commissioned, either by Health and Wellbeing Boards or by the NHS Commissioning Board and its regional arms.

So on the one hand, Health and Wellbeing Boards have a duty to promote integrated working and, as such, would lead on commissioning specialist services such as this locally. However, the White Paper also set out the intention for the NHS Commissioning Board to take responsibility for commissioning specialised services at both the national and regional level as informed by the Specialised Services National Definitions Set (SSNDS).The SSNDS contains definitions on 34 services. Definition 22, Specialised Mental Health Services (all ages), includes specialised services for Asperger syndrome and autism spectrum disorder.

It is, therefore, unclear how specialist autism teams will be commissioned in the future.

Further to this, each of the above commissioning scenarios is not without its problems. First, if 80% of the commissioning budget sits with consortia but the Health and Wellbeing Boards are responsible for commissioning of joint services, there is a worry that the major budget holders – the GPs – may not commission services whose primary benefit in the short to medium term will be to local authorities. This commissioning problem could also potentially become more complicated when a Health and Wellbeing Board has a number of consortia in an area. In theory, the incentive for GP consortia will be ‘free ride’ and not contribute to joint projects. Secondly, these specialist teams are more often than not commissioned jointly by local authorities and PCTs and therefore work across health and social care very effectively. By changing the funding mechanism and shifting these teams to a regional level, it may make it more difficult for these teams to integrate themselves into each local authority they serve and, therefore, limit the transformation effect these services can have.

Clearly, the Bill is not silent of ensuring Health and Wellbeing Boards and the NHS Commissioning Board cooperate, with clause 181 allowing for Health and Wellbeing Boards to request the NHS Commissioning Board appoint a representative to join the board. The NAS, however, are unsure this clause alone will solve the problem.

The NAS would, therefore, like the committee to consider tabling two probing amendments. The first to strengthen the role Health and Wellbeing Boards have in commissioning these services and the second for the Secretary of State to ensure there is continuous improvement of access to these specialist services.

1) The Health and Social Care Bill currently reads:

Part 5 – Public involvement and local government

Health and Wellbeing Boards: functions

Clause 179 Duty to encourage integrated working

(1) A Health and Wellbeing Board must, for the purpose of advancing the health and wellbeing of the people in its area, encourage persons who arrange for the provision of any health or social care services in that area to work in an integrated manner.

We would like the committee to consider adding:

…and lead on establishing joint health and social care budgets for the commissioning of specialist services as defined by the Specialised Services National Definitions Set (SSNDS).

2) The Health and Social Care Bill currently reads:

Part 1 – The health service in England

Clause 2 The Secretary of State’s duty as to improvement in quality of services

After section 1 of the National Health Service Act 2006 insert –

"1A Duty as to improvement in quality of services

(1) The Secretary of State must exercise the functions of the Secretary of State in relation to the health services with a view to securing continuous improvement in the quality of services provided to individuals for or in connections with –

(a) the prevention, diagnosis or treatment of illness, or

(b) the protection or improvement of public health

We would like the committee to consider adding:

(c) ensuring access to specialist services as defined by the Specialised Services National Definitions Set (SSNDS)

Diagnosis and ‘Any Willing Provider’ (AWP)

A central part of the Government’s vision for adults with autism is that they can get a diagnosis and access support it needed. [3] The case studies below demonstrate the costly implications of late/misdiagnosis for the individual and local service providers. The consequences of a failure to provide support at an early stage include increased expenditure over time, due to a significant waste of resources on the provision of ineffectual treatments.

Case Study: The failure to make a timely diagnosis .

"I spent my late teens and twenties involved with the mental health system, receiving diagnoses of anxiety and depression, self injury and anorexia and "personality disorder (unspecified)". From early on I said from time to time to different psychiatrists, nurses and therapists that I thought I was autistic (I’d read about spectrum conditions when working voluntarily with disabled children from when I was 16 years old), but they said I was too able for s uch a diagnosis to be useful. " (Person with autism) 

"12 years of misery, inappropriate therapies and inpatient settings. 12 years of self harm, leaving scars for life. Many inappropriate medications and a GP facilitated valium addiction. Unfortunately only having other people with mental health problems as friends for most of that time, meaning a confirmed cycle of negativity." (Person with autism)

There is a real shortage of diagnostic services at a local level. Searching our own database of services (which is by not exhaustive, but is the most comprehensive database of this type) we found only 15 NHS teams or individuals who actually diagnose autism in adults in England. [4] There are, however, 28 private sector services and 2 voluntary sector services.

As a result, adults with autism and carers tell us that they have had to fight to get a diagnosis in adulthood. The adult autism strategy echoes this and rightly identifies the challenges facing adults with suspected autism as they try to access diagnosis. It goes on to stress the importance of ensuring that diagnosis is easily accessible in every area with the aim that there is a pathway to diagnosis in each local area by 2013.

Currently, due to the limited number of diagnostic services and the long waiting lists, we are aware of many individuals who have received a private diagnosis of autism – and in particular Asperger syndrome – only for local authorities to reject this diagnosis during an individual’s community care assessment because it did not come from the NHS. Although, clearly local authorities should not be rejecting these diagnoses out of hand anyway, the NAS believes that a potential side benefit of AWP is that other statutory services – and in particular social services – will no longer be able to disregard private diagnoses. It should also mean that local authorities and GP commissioning consortia will have plenty of options when designing their pathway to diagnosis.

The NAS, therefore, cautiously welcome the Government’s move towards AWP but believes more detail is needed about how this would work in practice, particularly how the move towards AWP will affect other services such as community care assessments.

Key questions

1) When will guidance regarding AWP be published?

2) What is the legal status of diagnoses commissioned by private providers and how will these affect other statutory services?

3) Is it the Government’s vision that the pathway to diagnosis set out in the adult autism strategy can be provided by AWP?

February 2011


[1] Simonoff E. et al (2008), Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity , and associated factors in a population-derived sample, Journal of American Academy of Child and Adolescent Psychiatry 47: 4: 921-929

[2] Madders, T (2010) You Need To Know . London : The National Autistic Society.

[3] This figure comes from our survey over 1,400 people with autism and their parents/ carers . See M. Rosenblatt (2008) I Exist London : NAS

[4] Clark et al (2009) Supporting adults with autism through adulthood. The National Audit Office.

[5] Which will be discussed in more detail below

[6] The core dataset provides a list of indicators that can assist partners in preparing their JSNA with detailed information on each indicator .

[7] Clark et al (2009) Supporting adults with autism through adulthood, the National Audit Office

[1] Clark et al. (2009), ibid.

[2] Clark et al (2009) Supporting adults with autism through adulthood, the National Audit Office

[3] Department of Health (2010) Implementing “Fulfilling and rewarding lives” Statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_122847

[4] Autism Services Directory, National Autistic Society