Health and Social Care Bill

Memorandum submitted by Mencap (HS 18)

About Mencap

Mencap supports the 1.5 million people with a learning disability in the UK and their families and carers. Mencap fights to change laws and improve services and access to education, employment and leisure facilities, supporting thousands of people with a learning disability to live their lives the way they want. We are also one of the largest providers of services, information and advice for people with a learning disability across England , Northern Ireland and Wales . See www.mencap.org.uk for more information.

About learning disability

A learning disability is caused by the way the brain develops before, during or shortly after birth. It is always lifelong and affects someone's intellectual and social development. It used to be called mental handicap but this term is outdated and offensive. Learning disability is NOT a mental illness. The term learning difficulty is often incorrectly used interchangeably with learning disability.

Mencap’s interest in health

· Mencap have a long standing interest in the health of people with a learning disability

· Research has shown that people with a learning disability still experience worse health outcomes and health inequalities than the general population

· Mencap’s Death By Indifference report (2007) highlighted the 6 premature, avoidable deaths of people with a learning disability in the NHS

· These shocking deaths led to a government ordered independent inquiry (Sir Jonathan Michael/Healthcare for all) as well as an investigation by the Health Service Ombudsman (6 Lives report)

· Since these reports, progress has been made within the NHS, but performance is patchy

· A recent progress update to the Ombudsman (the 6 Lives Progress Report, DH, 2010) showed that concerns remain around poor use of mental capacity legislation and lack of health services being reasonably adjusted

· With the changes proposed in the bill, the challenge is to make sure that progress in driving better health outcomes for people with a learning disability is not lost

· Mencap leads the Getting it Right campaign, which is a coalition of charities and Royal Colleges working together to realise better health outcomes for all disabled people (including those with learning disability), collaborating on this bill.

What do health professionals know about learning disability?

A poll conducted by ICM on behalf of Mencap asked over 1,000 health professionals about their experiences and views of the way people with a learning disability are treated within the NHS. The main findings are as follows (regional figures are available):

1. Almost half of doctors and a third of nurses said that people with a learning disability receive a poorer standard of healthcare than the rest of the population.

2. Nearly half of doctors and a third of nurses revealed that they had personally witnessed a patient with a learning disability being treated with neglect or a lack of dignity or receiving poor quality care.

3. Four out of ten doctors and a third of nurses said people with a learning disability are discriminated against in the NHS

4. A third of healthcare professionals have not been trained in how to make reasonable adjustments for a patient with a learning disability

5. Over half of doctors and more than two thirds of nurses said they needed specific guidelines on how care and treatment should be adjusted to meet the needs of those with a learning disability

General points on the Health and Social Care Bill 2011

Mencap accepts the general direction of travel as laid out on the face of the Bill and is keen to ensure that the new NHS structures are constructed in the fashion that best delivers improved health outcomes for people with a disability (including those with a learning disability), without prejudice to other groups. This bill present a number of opportunities to improve the healthcare offered to people with a disability, including the focus that comes from the NHS outcomes Framework, the arrival of Healthwatch, NICE quality standards and the roles and duties of the NHS Commissioning Board and the GP Consortia.

Challenges in ensuring better health for all people, including those with disabilities

· Only three mentions of disability are made throughout the Bill

· In the bill there is very little mention of need to tackle existing health inequalities or discrimination for all groups, not just those that are easiest to reach

· Most of the detail on how the new structures will work in practice is left for regulations and secondary legislation

· Although this is not unexpected, it will be crucial for those with an interest in driving health outcomes for people with a disability to consistently engage on this issue

Key issues Mencap would like the bill to address

a) The need for all new bodies to tackle discrimination and improve health outcomes for all people

People with a learning disability still experience worse healthcare and get worse outcomes than the general population. People with a learning disability are at disproportionate risk of premature death, epilepsy and mental health problems.

Mencap will be proposing amendments to ask that there be explicit duties on all bodies within the new NHS structure to tackle discrimination and improve health outcomes for all patients, not just those that are easiest to reach.

b) GPs as commissioners – particularly for those with the most complex needs

Commissioning of services for people with a learning disability by Primary Care Trusts (PCTs) has been patchy and it is questionable whether commissioning led by GP consortia will lead to improvements. It is possible however that the transition will pose issues in ensuring that progress made at regional level, by some very dedicated individual NHS staff, is not lost.

Mencap fully supports personal budgets and would like to see them extended to all who need them, with no upper limit on the amount that can be spent on the package offered. Mencap believes that the piloting of personal health budgets has brought a new era of choice and control for people with profound and multiple learning disabilities and their families.

However given the relative expense of these packages, and budget cuts, Mencap believes that commissioning for this group should fall within the ambit of the NHS Commissioning Board, as otherwise the temptation may be too strong for local authorities to cut care packages and so deny the right to a dignified and meaningful life for this group.

The Raising our Sights report (Department of Health, 2010) showed that for patients with the most complex needs joined up planning is essential if people are to live longer and healthier lives. This joined up planning needs to span both health and social care.

Given the changes planned to commissioning, Mencap believes that there is a real risk of fragmentation and the possibility of a triple discrimination. A triple discrimination could occur if GPs fail to make reasonable adjustments in their work (recent Mencap polling showed that GPs did not feel they had enough training to reasonably adjust their services for patients with a learning disability).  This could then be compounded as patients with a learning disability go into hospital-where there lives have often not been properly valued. If commissioning is then done by consortia of GP, without the right training, people with a learning disability may not be fully considered when designing services.

c) Health professionals and reasonable adjustments

Making reasonable adjustments makes good clinical sense for healthcare professionals, particularly given the increasing tendency towards payment by results, which should incentivise professionals to deliver the right healthcare first time. Reasonable adjustments have a clear basis in law (Disability Discrimination Act, Equality Act) and are implicitly supported by the Human Rights Act.

In the primary care setting, a key reasonable adjustment is the annual health check. This is offered by some GPs and is currently funded under the Direct Enhanced Scheme payment. Evidence from Australia has shown that the use of a health check with people with a learning disability led to a 6.6-fold increase in detection of vision impairment,  inter alia. The use of annual health checks has also been reported to deliver positive gains in health outcomes over a 12-month period. 

In England , during 2008/09, 41% of those eligible had a health check -this has meant that nearly 6/10 people are not getting a service that could be extremely helpful in realising the preventative health agenda.

Mencap believes that within the proposed changes to NHS, a key reasonable adjustment should be continuation of the Annual Health Check.

Mencap believes that GP Commissioners and the NHS Commissioning Board need to be given explicit guidance from the outset as to the importance, in all clinical specialties, of making reasonable adjustments to include people with a learning disability.

d) Accessibility (in the context of the NHS Commissioning Boards and Foundation Trusts, Health Watch England etc;

People with a learning disability, people with communication difficulties, older people, people with visual impairments and those with hearing difficulties are often heavier users of the NHS than others. Given the Equalities Act stricture to ensure that there is no "substantial discrimination" in the public sector, it is vital that the NHS Commissioning Board (along with all the other parts of the new NHS structure) is fully accessible to all these.

e) The importance of collecting data by impairment group;

People with a learning disability continue to die prematurely and avoidably, as the cluster of deaths at Royal Berkshire, and Basildon and Thurrock NHS Trusts have attested. It is vital that data on the safety of services is made available to the widest constituency, in order to drive patient choice and patient safety. Without the breakdown of this data (by impairment type) it is not obvious to see how the system will prevent a repeat of these clusters of deaths.

f) The importance of advocacy services;

With the proposal in the bill for local Healthwatch to support people with complaints, through the provision of advocacy, Mencap’s experience may be informative.

Mencap has supported a large number of families through the NHS complaints system, through both the local and ombudsman stage. In our experience, going through these stages can take many years. Mencap is aware of many cases where the complaints process has taken more than 2 years. Advocacy support should be extended for as long as it is needed. Starting and then stopping advocacy support to families could be deeply upsetting to these families.

Mencap therefore believe it is vital that advocacy support be extended for as long as needed. Without a commitment for "as long as it takes support", families will havea harder time getting justice and the NHS will have less opportunities to learn from their mistakes.

What Mencap wants from the Bill (and associated guidance)

· For there to be explicit duties on all bodies within the new structure to tackle discrimination and reduce health inequalities for all

· Ensuring GPs (and all healthcare professionals) know how to make reasonable adjustments when delivering care to patients with a learning disability

· Support for provision of personal budgets, particularly where the high costs may be seen as prohibitive by commissioners.

· For the NHS commissioning board to commission services for people with Profound and Multiple Learning Disabilities (PMLD)

· For the NHS Commissioning Board to ask NICE to produce quality standards on learning disability and to inform standards

· Need for collection of data on all health outcomes, across the NHS, disaggregated by disability/impairment type

· Ensuring all new NHS structures (Commissioning Board, Consortia, Healthwatch England and local as well as Health and Wellbeing Boards) have a duty to fully engage with disabled people


How the Bill Committee might be able to help to drive up outcomes for all people

Members of the Bill Committee can play a key role in clarifying the government’s commitment to disabled people. Mencap would like members to consider the following points:

1. How will the Secretary of State ensure that the NHS tackles discrimination and improves the health of people with a disability?

2. What role can the NHS Commissioning Board play in developing commissioning expertise around those with the most complex disabilities – including Profound and Multiple Learning Disabilities?

3. A survey of 1000 healthcare professionals commissioned by Mencap (June 2010) found that GPs did not understand how to make reasonable adjustments to their work when dealing with patients with a learning disability. How can this be addressed?

4. What reassurances can we have that the workings of the NHS Commissioning Board will be genuinely open and accessible to those with disabilities?

5. How can data on the health needs of people with disabilities be collected, made available and used to drive and inform patient choice?

6. How can we ensure that Commissioning Consortia have a duty to commission for all in their area, including the often specialist (and expensive) health needs of people with disabilities, without reference to cost (particularly around personal budgets)?

7. How can we ensure that Foundation Trust meetings and communications are fully accessible to disabled people?

8. How can we ensure that Healthwatch England and the Local Healthwatch proceedings are fully open for and accessible to people with a disability?

9. What reassurances can the Secretary of State give us that advocacy, provided via the Local Healthwatch (possibly via a third party) will be offered for as long as needed, particularly given the years it may take for a complaint to go through the NHS?

10. What reassurance can the Secretary of State offer on Health and Wellbeing Boards and ensuring that each of the new bodies have a duty to consult disabled people, given their specific needs and the proven health inequalities that exist?

Suggested amendments for Committee consideration

Page 2: Clause 2 (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 service with a view to securing continuous

improvement in the quality of services provided to individuals for or in

connection with:

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

(b) the protection or improvement of public health. or

C) the promotion and improvement of the health of all disabled people, including those with co-morbidities,

(D) tackling discrimination/promoting greater health equality

This amendment aims to ensure the Secretary of State has a clear duty with regards to tackling health inequalities and discrimination faced by all people, including those with a disability.

Page 7: Clause 11 – line 3 – Secretary of State’s power to require Board to commission certain health services

(1) Regulations may require the Board to arrange, to such extent as it considers necessary to meet all reasonable requirements, for the provision as part of the health service of-

(a) dental services of a prescribed description;

(b) services or facilities for members of the armed forces or their families;

(c) services or facilities for persons who are detained in a prison or in other accommodation of a prescribed description;

(d) services or facilities for those with profound and multiple learning disabilities

(e) such other services or facilities as may be prescribed, including for those with profound and multiple learning disabilities and people with complex needs whose behaviour challenges services

Mencap believes that the piloting of personal health budgets has brought a new era of choice and control for people with profound and multiple learning disabilities and their families. Mencap fully supports personal budgets and would like to see them extended to all who need them, with no upper limit on the amount that can be spent.

However given the relative expense of these packages, Mencap believes that commissioning for this group should fall within the ambit of the NHS Commissioning Board, as otherwise the temptation may be too strong for local authorities to cut care packages and so deny the right to a dignified and meaningful life for this group.

Page 18: Clause 13L (2) – Line 33

Public involvement and consultation by the Board

After (c) ADD

(d) ensuring that reasonable adjustments are made so that the views of people with any impairments or disabilities can also be sought in relation to subsections (a-c)

People with a learning disability, people with communication difficulties, older people, people with visual impairments and those with hearing difficulties are often heavier users of the NHS than others. Given the Equalities Act stricture to ensure that there is no "substantial discrimination" in the public sector, it is vital that the NHS Commissioning Board (along with all the other parts of the new NHS structure) is fully accessible to all these.

Page 18: Clause 13M (1) Information on safety of services provided by the health service

The Board must establish and operate systems for collecting and analysing information relating to the safety of the services provided by the health service, and provide a break down of the data by disability impairment type

People with a learning disability continue to die prematurely and avoidably, as the cluster of deaths at Royal Berkshire, and Basildon and Thurrock NHS Trusts have attested. It is vital that data on the safety of services is made available to the widest constituency, in order to drive patient choice and patient safety. Without the breakdown of this data (by impairment type) it is not obvious to see how the system will prevent a repeat of these clusters of deaths.

Page 29: Clause 14L (1) Duty as to improvement in quality of services

Each commissioning consortium must exercise its functions with a view to securing continuous improvement in the quality of services provided to individuals for or in connection with the prevention, diagnosis or treatment of illness, including for people with a disability

Despite a central NHS tariff it is possible that the move commissioning consortia will see an ever higher focus on the cost of provision for an individual patient rather than on the improved health outcomes that may accrue. We remain particularly concerned about the issues pertaining to those loved and valued family members who have PMLD and seek reassurance that this duty will apply to all.

Page 30: Clause 14N Duties as to reducing inequalities, promoting patient involvement etc.

(1) Each commissioning consortium must, in the exercise of its functions,

have regard to the need to-

(a) reduce inequalities between all patients with respect to their ability

to access health services;

(b) reduce inequalities between all patients with respect to the

outcomes achieved for them by the provision of health services and tackle discrimination

(c) promote the involvement of all patients and their carers in

decisions about the provision of health services to them;

(d) enable all patients to make choices with respect to aspects of

services provided to them as part of the health service.

(e) collect data on the experience and outcomes experienced by all patients and where the person has a disability, break data down by impairment type

Mencap want it made explicit that consortia must have regard to these issues for all patients, rather than just those are easiest to reach. Choice and control are often not as widespread for people with a disability as they are for the general population and therefore this is an important statement of intent.

It is vital that data on the safety of services is made available to the widest constituency, in order to drive patient choice and patient safety. Without the breakdown of this data (by impairment type) it is not obvious to see how the system will prevent a repeat of these clusters of deaths.

Page 30: Clause 14P (2) Public involvement and consultation by commissioning consortia

After subclause (c) ADD

(2a) Regulations may also be introduced to ensure that consortium should engage proactively and seek the views of all disabled people and marginalised groups

People with a disability often make much greater use of the NHS than the general public. Given the Equalities Act stricture to ensure that there is no "substantial discrimination" in the public sector, and as Consortia will be a Public Body under this act, it is vital that the Commissioning Consortia are fully accessible to all people, including those with a disability.

Page 60: Clause 44 Secretary of State's annual report

In Part 13 of the National Health Service Act 2006 before section 248 insert-

20 "247B Secretary of State's annual report

(1) The Secretary of State must publish an annual report on the performance of the health service in England.

(2) The Secretary of State must lay any report prepared under this section before Parliament."

After subclause (2) ADD

(1a) The Secretary of State must include progress on tackling health inequalities for hard to reach groups and those with a disability

This statutory duty to report on progress in tackling health inequalities would keep up the momentum to ensure that progress in outcomes was made for all.

Page 119: Clause 138 (2) – line 43 - Members

"(2) In deciding which areas are to be areas for public constituencies, or in

deciding whether there is to be a patients’ constituency, an NHS

foundation trust must have regard to the need for those eligible for

such membership to be representative of those to whom the trust

provides services and ensure that such proceedings are made fully accessible to any disabled persons"

Rationale for this point has been previously made above.


Page 138: Clause 45A (3) – Line 37 Advice given by Healthwatch England

After (3)(b) add:

(C) Advice on how to ensure that all meetings, communications and reports are fully accessible to those with a disability or any form of impairment "

See rationale above.

Page 143: Clause 170 (4) Independent Advocacy Services

"Each local authority must make such other arrangements as it considers appropriate for the provision of assistance to individuals in connection with complaints relating to the provision of services as part of the health service, ensuring that there is no upper limit on the length and type of advocacy support that may be provided

NHS complaints, through either the local or ombudsman stage may take many years. Starting and then stopping advocacy support to families could be deeply upsetting to these families. Mencap is aware of many cases where the complaints process has taken more than 2 years. Advocacy support should be extended for as long as it is needed.

Page 150: Clause 177 (2) Line 10 -  Joint strategic needs assessments

"(2) The responsible local authority and each of its partner commissioning consortia must 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 and the steps they will take to tackle discrimination and ensuring equality of access and outcomes for people with a disability"

If the government is to live up to its ambition of "no decision about me, without me", it is vital that disabled people are involved in the formulation of Joint strategic needs assessments.

Page 152: Clause 178 (2) Establishment of Health and Wellbeing Boards

"The Health and Wellbeing Board is to consist of-

(a) subject to subsection (4), at least one councillor of the local authority, nominated in accordance with subsection (3),

(b) the director of adult social services for the local authority,

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

(d) the director of public health for the local authority,

(e) a representative of the Local Healthwatch Organisation for the area of the local authority,

(f) a representative of each relevant commissioning consortium, and

(f1) representatives from relevant user groups, such as disabled people’s organisations, learning disability partnership boards and a representative from local voluntary sector organisations who represent marginalised groups"

See rationale above.

Page 152: Clause 179 (1) Duty to encourage integrated working

"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 and must engage with disabled people, marginalised groups, hard to reach groups, carer groups and voluntary groups

See rationale above.

Page 189: Clause 217 (1) National Institute for Health and Care Excellence

In exercising its functions NICE must have regard to-

a) the broad balance between the benefits and costs of the provision of health services or of social care in England,

b) the degree of need of persons for health services or social care in England and the importance of tackling known health inequalities and discrimination."

c) the desirability of promoting innovation in the provision of health services or of social care in England.

Page 201: Clause 243 (5) Publication of information

In considering the appropriate form, manner and intervals for publication of information under this section, the Information Centre must have regard to-

(a) the need for the information to be easily accessible to all people including those with specific access needs

(b) the persons who the Centre considers likely to use the information, and

(c) the uses to which the Centre considers the information is likely to be put.

(d) the ability to break down the data by disability impairment type

Mencap welcome Patient Reported Outcomes Measures for recording patient experience. That said they have often been poor at capturing the experiences of people with a learning disability, their families and carers. Any efforts to gather patient experience must be fully accessible to all groups.

The points on data are as per the points made previously in this document.

Page 223: Schedule 1 – NHS Commissioning Board - (8) Staff

AFTER

(1) The Board may appoint such committees and sub-committees as it considers appropriate

ADD

(1a) The Board must consider the most appropriate way of ensuring the views of disabled people, marginalised groups, hard to reach groups, carer groups and voluntary groups are sought

Page 229: Schedule 2 – Commissioning Consortia – (6) Accountable Officer

AFTER

The accountable officer is responsible for ensuring that the consortium or, in the case of a joint appointment, each of the consortia in question-

(a) complies with its obligations under-

(i) sections 14K and 14L,

(ii) sections 223I to 223K,

(iii) paragraphs 12 and 13 of this Schedule, and

(iv)any other provision of this Act specified in a document published by the Board for the purposes of this sub-paragraph,

ADD

(v) Tackle known health inequalities, reduce discrimination and ensure that the Consortium’s proceedings are open to all, including those with disabilities.

Aiming to ensure that Commissioning Consortia should have regard to tackling health inequalities, reducing discrimination and ensuring the proceedings of the Commissioning Consortia are open to all.

February 2011