learning disabilities and obesity framework for...
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October 2011 1
West Midlands Strategic Health AuthorityWest Midlands Strategic Health AuthorityWest Midlands Strategic Health AuthorityWest Midlands Strategic Health Authority
Learning Disabilities and Obesity
West Midlands Framework for Action
Introduction
The Department of Health West Midlands and its partners made the decision in 2009/10 to develop a focus on the needs of people with learning difficulties regarding
maintaining a healthy weight, participating in physical activity and making healthy food choices.
The initial stages of this focus included:
• Gaining an understanding of the agendas, policies and challenges effecting people with learning disabilities
• Developing an understanding of the relationship between obesity and learning disabilities
• Understanding the challenges of maintaining a healthy weight for people with learning disabilities
• Developing knowledge of the programmes of work happening already to tackle obesity within this specific group in the community.
These areas of work were developed in partnership with Department of Health West Midlands, public health and social care teams, West Midlands Public Health
Observatory, NHS West Midlands and PAN-WM culminating in a workshop focussing on learning and Disabilities that was held in early January 2010.
The event was attended by a range of specialists from the obesity, learning disabilities, physical activity, sport, transport, dance, healthy eating and health sectors and
focussed on answering the following questions.
1. What are the strategic hooks and levers that will support us in taking forward work regarding obesity and learning disabilities?
2. Please identify any programmes of work that you are aware of that are happening in the West Midlands to target people with Learning Disabilities regarding
maintaining a healthy weight, healthy eating and physical activity. Please indicate those that you consider to be good practice
3. What are the Challenges faced by people with learning disabilities in maintaining a healthy weight, eat healthily and participate in physical activity?
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4. What Challenges do we face in a) effectively targeting and developing programmes to reach this target group and b) ensuring that mainstream services are
accessible for people with learning disabilities?
5. What more do we need to do at a regional level to support people with learning disabilities to maintain a healthy weight, eat healthily and become more
active?
6. Following your discussions what actions would you like to see taken forward following this meeting?
The feedback from the workshop has been used to develop this framework for action for the Department of Health West Midlands, NHS West Midlands, PAN-WM and
their partners across the West Midlands.
2.0 The context for the development of the framework for action
2.1 Current knowledge regarding Learning Disability and Obesity
• Learning disability is one of the most common forms of disability in the UK. (Source: Mencap).
• About 985,000 people in England have a learning disability (about 2% of the population). 796,000 of them are aged 20 or over.
• The number of adults with learning disabilities is predicted to increase by 11% between 2001 and 2021. This would raise the number of people in England aged 15
and above with learning disabilities to over one million in 2021. (Source: Estimating Future Need/Demand for Supports for Adults with Learning Disabilities in
England, Institute for Health Research, Lancaster University 2004).
• There are 55,000-75,000 children with a moderate or severe learning disability in England. (Source: www.learningdisabilities.org.uk statistics – accessed online
2009)
• In 2008/09 there were 14185 working age West Midlands learning disabled clients known to CASSRs who are in settled accommodation at the time of their latest
assessment or review. (Source: NASCIS National Adult Social Care Intelligence Service)
• Figures in relation to the numbers of people with a learning disability who are also obese are scarce.
• Data is available for the prevalence and rates of obesity; similarly it is possible to obtain some limited data in relation to numbers of people with a learning disability
- There does not seem to be an overlap to identify people in both groupings.
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• Obesity appears to be more common among people with learning disabilities. Source (Obesity in people with intellectual disabilities; the impact of nurse-led health
screenings and health promotion activities; Marshall D et al. Journal of advances Nursing - 2003)
• About one person in three with a learning disability is obese compared to one in five of the general population. (Source: Equal Treatment: Closing the Gap Interim
Report, Disability Rights Commission 2005)
Sport and Recreational Activities
• In 2007/08, disabled people were significantly less likely to participate in active sports or in moderate intensity level sports during the past 4 weeks than non
disabled people. 30.1% of disabled people participated in active sports compared to 59.6% of non disabled people.
• Figures from 2007/08 show that in activities such as the historic environment, museums and galleries, a significantly smaller proportion of disabled people
participated than non disabled people.
• There is some evidence to suggest that levels of physical activity are lower in people with limiting disabilities
(Source: Taking Part Survey. ‘Taking Part: The National Survey of Culture, Leisure and Sport’ - DCMS)
Diet and Nutrition
• Historically many people with a learning disability lived in long stay hospitals and many nutritional problems have been found in these people.
• Some people with a learning disability may only eat a limited range of foods. An example of this is when someone will only eat certain textures, such as those that
don’t need to be chewed.
• Prader-Willis is a syndrome where people with a learning disability have an insatiable appetite and eat excessively even when they are full. This can lead to chronic
obesity (Source: Mencap – Diet and people with a learning disability)
2.2 The Strategic context for the development of the framework.
The West Midlands Learning Disabilities and Obesity Framework for Action will support the delivery of a number of strategies at a National and West Midlands level. This
list is not exhaustive but identifies the key health, social care and public health related policies contributing to this agenda. It is recommended that this framework be read
in the context of wider policies that contribute to the Obesity, health and social care agendas for example, economic, environmental, planning, sport and transport
strategies at all levels of governance.
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National:
• Valuing People Now and the Valuing People Now Summary report on progress (2010)
• The NHS White Paper, Equity and excellence: Liberating the NHS (2010)Healthy Lives, Healthy People: Our strategy for public health in England (2010)
• Social Care White Paper 'A vision for adult social care: Capable communities and active citizens'
• Public Health White Paper; Healthy Lives, Healthy People (2010)
• No Health Without Mental Health Strategy (2011)
• The Quality, Innovation, Productivity and Prevention (QIPP) programme
• Forthcoming Green Paper on Special Educational Needs and Disability
• Healthy Lives, Healthy People: A call to action on obesity in England
• The 2011 update for the UK Physical Activity Guidelines
The Coalition Government have stated their commitment to fulfil the priorities laid out by the previous Government in the Valuing People Now strategy, reiterating a
pledge for equity, excellence and personalised services for all people with learning disabilities. The vision stated in Valuing People Now is reinforced in the valuing
People Now Summary Report as;
“All people have the right to lead their lives like any others, with the same opportunities and responsibilities, with the right
support to make this possible and be treated with the same dignity and respect”
The summary document details the progress made by the Learning Disability Partnership Boards at a local and regional level, recognising the improvements made across
health, housing and employment priorities, this includes 59,000 people having received an annual health check in 2009/10. Concerns raised in the report include:
• Obeying the law around capacity, consent and best interests decision making
• Lack of understanding of people who work in the health service about the needs of people with learning disabilities, how to communicate effectively and how to
make “reasonable adjustments” were all key issues.
• Complaints and advocacy
• Half of those eligible for annual health checks are not undertaking them.
The areas of work identified for improved delivery in the progress report are clearly aligned to the agendas featured in the NHS White Paper, Equity and excellence:
Liberating the NHS providing;
• Greater control to people over their health and care
• Greater accountability for patient outcomes for both the NHS and Social care
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• Health and care professionals being encouraged and supported to work more effectively across boundaries to achieve improved outcomes.
The Department of Health business plan for 2011 – 2015 states a priority to create a public health service which rebalances our approach to health, drawing together
national leadership with local delivery, and fostering a new sense of community and social responsibility. This includes the delivery of a social care white paper and the
Public health White Paper that was published in December 2010.
The Public Health White Paper plans see an increased priority for Public Health within Government plans with dedicated resource allocated through ring fenced public
health budgets for the Local Authorities, this could be in excess of £4 billion per annum (although this has not yet been confirmed). The document takes a life course
approach to public health and recognises that further documents (including strategies) are needed to focus on specific areas such as mental health, obesity, physical activity
etc. The Obesity and Physical Activity papers are due to be published in spring 2011. The document also makes links to the Local Transport White Paper and the Natural
Environment White Papers that are due out imminently.
The new Public Health Service will focus on key outcomes developed into a framework that will include 5 domains:
• Health protection
• Tackling wider determinants
• Health improvement – promoting the adoption of health lifestyles
• Preventing ill health
• Healthy life expectancy
The Healthy Lives, Healthy People: A call to action on obesity in England sets out the Government’s new national ambitions for a downward trend in excess weight in both
children and adults by 2020 and details the wide ranging partnerships across the public, private and voluntary sector that will be needed to make the ambition a reality.
This framework links directly into this call for action and the updated physical activity guidelines that were launched in 2011.
All of the Public health and the aforementioned obesity outcomes are directly linked to the actions within this framework and localities signing up to deliver the actions
outlined in this framework will be showing their commitment to the delivery of these outcomes for people with Learning Disabilities and their carers.
The Social Care White Paper “A vision for adult social care: Capable communities and active citizens”(published in November 2010) is set around the pillars of Freedom,
Fairness and Responsibility and 7 key principles of Prevention, Personalisation, Partnerships, Plurality of the markets, Protection, Productivity and People. The delivery of
the vision, pillars and principles focus upon;
• Extend the provision of personal budgets
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• Professionals working more closely with people who use services
• Carers provided with support
• Developing local schemes and networks of support run by communities
• Breaking down barriers between health and social care funding to incentivise preventative action
• Enabling people to have the freedom to choose the services that are right for them.
The “No Health Without Mental Health” Strategy published by the Department of Health in February 2011 sets the Government’s approach to working in partnership to
deliver better mental health outcomes for all, taking a life course approach. It focuses on 6 objectives;
• More people will have good mental health
• More people with mental health problems will recover
• More people with mental health problems will have good physical health
• More people will have a positive experience of care and support
• Fewer people will suffer avoidable harm
• Fewer people will experience stigma and discrimination
The strategy is linked to wider Government and society agendas including employment, education, benefits system reforms, criminality and reducing health risk behaviours.
The strategy documents that 25 – 40% of people with Learning Disabilities have mental health problems and recognises the need to make mental health accessible to all
disabled people and to consider early interventions to prevent later problems for children and young people with special educational needs and disability in the special
educational needs and disability green paper from the Department for Education. The strategy includes actions to:
• Provide support to carers
• Improve the inclusivity of mainstream mental health services for people with learning disabilities who have mental health problems.
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• Develop the skills of staff and the provision of adjustments to meet the individual needs of people with learning disabilities and autism in mental health, health and
public health services.
The Quality, Innovation, Productivity and Prevention (QIPP) programme works at a national, regional and local level to support NHS organisations to improve the quality of
care they deliver while making efficiency savings that can be reinvested in the service to deliver year on year quality improvements. There are 12 national work-streams
linked to the programme, five of which focus on how care is commissioned, long-term conditions, right care, safe care, urgent care and end of life care. A further five look at
procurement, how organisations are staffed and run, improving productivity and efficiency. The final two elements focus on primary care commissioning and contracting
and the role of digital technology in delivering quality and productivity improvement.
The long term conditions work-stream is perhaps the most relevant to the LD and Obesity agenda and includes support to
• Ensure commissioners understand the needs of their population and managing those at risk to prevent disease progression
• Empower patients to maximise self-management including ensuring patients have a care plan and appropriate information and knowledge about how to manage
their condition.
• Provide joined up and personal services particularly in community and primary care and working closely and effectively with social care.
• Deliver strong professional and clinical leadership and workforce development
The commissioning, procurement and staffing work-streams also have relevance to this framework with regards to how services are procured and commissioned and the
staff development required to enable services to have reasonable adjustments made to support people with learning disabilities to maintain a healthy weight.
Measuring outcomes
The Public Health, NHS and Adult Social Care Outcomes framework have been developed to measure progress towards meeting the objectives in the aforementioned
strategies. The indicators that relate to learning disabilities and obesity and this framework for action are identified in the table overleaf.
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Indicator/Improvement area Public Health Outcomes Framework NHS Outcomes Framework
2011/2012
Adult Social Care Outcomes
Framework
Domain
2
Domain
3
Domain
4
Domain
5
Domain
1
Domain
2
Domain
4
Domain
1
Domain
3
Domain
4
Proportion of People with
mental illness and or disability
in settled accommodation
(Source TBC)
x
Access & utilisation of green
space (Engagement with
Natural Environment Survey)
x
Cycling Participation (Active
People)
x
Social connectedness (DCLG
Citizenship Survey)
x
Prevalence of healthy weight
in 4 – 5 & 10 – 11 year olds
(NCMP)
x
Prevalence of healthy weight
in adults (Health Survey for
England)
x
% of adults meeting
recommended guidelines on
physical activity (5 x 30) per
week (Active People)
x
Self-reported wellbeing (TBC) x
Prevalence of recorded
Diabetes (GP Practice System)
x
Mortality rate of people with
mental illness (TBC)*
(Reducing premature death in
people with serious mental
illness)
x x
Under 75 mortality rate CV x
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Indicator/Improvement area Public Health Outcomes Framework NHS Outcomes Framework
2011/2012
Adult Social Care Outcomes
Framework
Domain
2
Domain
3
Domain
4
Domain
5
Domain
1
Domain
2
Domain
4
Domain
1
Domain
3
Domain
4
disease
Ensuring people supported to
manage their condition;
Proportion of people feeling
supported to manage their
condition
x x
Enhancing Quality of Life for
carers; Health related quality
of life for carers
x x
Patient experience of Primary
Care
x
Patient experience of Hospital
Care
x
Overarching measure; Social
care related quality of life
(Adult Social Care Survey)
x
The proportion of people
using Adult Social Care
Services who have control
over their daily life
x
Promoting personalised
services; proportion of people
using social care who receive
self-directed support (Social
Care data collection)
x
Overall satisfaction with local
adult social care services
(Adult Social Care Survey)
x
Proportion of people using
social care and carers who
x
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Indicator/Improvement area Public Health Outcomes Framework NHS Outcomes Framework
2011/2012
Adult Social Care Outcomes
Framework
Domain
2
Domain
3
Domain
4
Domain
5
Domain
1
Domain
2
Domain
4
Domain
1
Domain
3
Domain
4
express difficulty in finding
information and advice about
local services (Adult Social
Care Survey & Carers Survey)
Treating carers as equal
partners; The proportion of
carers who report they have
been included or consulted in
discussions about the person
they care for.
x
Ensuring a safe environment
for people with LD;
Proportion of adults with LD
in settled accommodation
(Adult Social Care combined
activity return)
x
West Midlands Context
The delivery of this Framework for Action would support the meeting of the;
• West Midlands Health and Well Being Strategy
• NHS West Midlands Investing4Health Programme
• Regional valuing People Now Strategic Programme
• Commissioning for Quality and Innovation (CQUIN) Improving Care and Health Outcomes for people with Learning Disabilities in Acute Hospital Settings through
implementing the coding and flagging systems indicator, training for staff on improving care pathways for people with LD indicator and improving the quality of
patient care through reasonable adjustments to care systems indicator.
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The context for the local delivery of this framework would be determined by local partners working to tackle obesity and deliver the valuing people now agendas and
services for people with learning disabilities.
3.0 The Framework for action
The Action Plan is formulated under 5 headings, 4 of which were determined at the January 2010 workshop with a fifth strand of strategic development included to ensure
that the framework is effectively linked to the West Midlands Learning Disability Partnership, the headings are:
Local Policy Development
Research
Training
Alignment of Joint Priorities
Profile
Area of work Action Links to existing
work
Lead
Organisation
Partner
Organisations
Timescales Progress
LOCAL POLICY DEVELOPMENT
Deliver further
progress against the
Valuing People Now
agenda, taking forward
the areas for
improvement
identified in the
summary report
• Deliver plans to give greater control
to people over their health and care
• Deliver plans for greater
accountability for patient outcomes
for both the NHS and Social care
linked to the NHS White Paper
• Deliver the actions in this
framework to support and
encourage Health and care
professionals to work more
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Area of work Action Links to existing
work
Lead
Organisation
Partner
Organisations
Timescales Progress
effectively across boundaries to
achieve improved outcomes.
• Increase the percentage of eligible
people attending the annual health
check.
• Ensure the Learning Disability and
Obesity agenda is effectively linked
to regional and local QIPP and
CQUIN agendas.
Improve Cross
boundary working to
deliver better
outcomes for people
with Learning
Disabilities and their
carers.
• Create effective links between Local
Learning Disability Partnerships and
emerging Health and Well Being
Boards.
• Achieve 100% sign up of Health and
Well Being Boards to the delivery of
this framework
• Work with one or more of the
Trailblazer Clinical Commissioning
Groups to profile and trial how LD
and Obesity can best feature in their
commissioning plans and share best
practice across the region.
• Encourage Health and Well Being
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Area of work Action Links to existing
work
Lead
Organisation
Partner
Organisations
Timescales Progress
Boards and NHS Commissioning
Boards to utilise NHS and Public
health incentives to maximise
delivery of obesity related services
to people with Learning Disabilities
and their carers
• Encourage local partnerships to
embed obesity prevention and
management in social care agendas
and prioritise people with Learning
Disabilities within plans to tackle
Obesity.
• Support work to develop the
plurality of the social care and
health market – particularly
informing and supporting physical
activity/healthy eating/weight
management organisations in the
private and voluntary sector (linked
to social care white paper) to
maximise opportunities from the
personalisation and prevention
agendas to create better outcomes.
Influence National
agendas
• Brief the national DH Obesity,
physical activity, healthy eating and
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Area of work Action Links to existing
work
Lead
Organisation
Partner
Organisations
Timescales Progress
social care teams regarding the WM
approach to Learning Disabilities
and Obesity and report progress
made.
• Influence the inclusion of people
with learning disabilities at risk of
obesity or identified as having
obesity within the Government’s
Responsibility deal networks,
particularly the food, physical
activity and behaviour change
networks.
• Ensure that best practice identified
during the delivery of the
framework is circulated to national
partners.
Manage change and
ensure that this
Framework for Action
remains Fit for purpose
• Regularly review the framework for
action against the emerging
national, West Midlands and local
landscape and priorities and ensure
that amendments are made to
enable it to remain fit for purpose.
RESEARCH
Develop a better
understanding of what
• Investigate the potential for an
obesity/physical activity/healthy
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Area of work Action Links to existing
work
Lead
Organisation
Partner
Organisations
Timescales Progress
is happening to
prevent/tackle obesity
for people with
learning disabilities
eating question to be included
within the Locality VPN Self
Assessment Tool.
• Investigate the potential to develop
a West Midlands approach to the
Locality VPN Self Assessment data
that incorporates obesity
• Investigate how issue of target
groups for projects can be included
within future physical activity and
healthy eating auditing of PCTs.
• Investigate examples of physical
activity, healthy eating and obesity
programmes targeting people with
learning disabilities on the
Pacesetters website
• Collate and share examples of best
practice through obesity, PAN-WM,
food and learning disabilities
networks.
• Investigate levels of facilitated
physical activities and healthy eating
sessions within accommodation and
day centres for people with learning
disabilities.
• Investigate current and potential
future role of Health Trainers in
working with specific groups in the
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Area of work Action Links to existing
work
Lead
Organisation
Partner
Organisations
Timescales Progress
community to support behaviour
change – including those with
learning disabilities and their carers.
Develop a better
understanding of
healthy eating and
physical activity needs
of people with learning
disabilities and their
carers.
• Commission a review/survey into
healthy eating and physical activity
levels for people with learning
disabilities
• Create links to the Public Health
Observatory leading on learning
disabilities
• Work with localities to determine
the best methods to access people
with learning disabilities and their
carers to provide messages.
TRAINING
Training needs
identification
• Identify who needs to receive
training regarding obesity, healthy
eating, and physical activity to
support people with learning
disabilities to achieve a healthy
weight. Possibilities include people
with learning disabilities, carers,
support workers, caterers, and
health professionals.
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Area of work Action Links to existing
work
Lead
Organisation
Partner
Organisations
Timescales Progress
• Identify the training and support
needs of carers regarding
supporting people with learning
disabilities to become more active
and eat healthily.
Training development
and delivery
• Prioritise the identified training
needs, develop and deliver training
to meet the identified needs
ALIGNMENT OF JOINT PRIORITIES
Create links to related
programmes and
agendas
• Create and maximise the 2012
Olympic and Paralypmic legacy
opportunities to raise the profile of
learning disabilities.
• Ensure that the West Midlands
2012 plans and programmes
incorporate messages regarding
people with learning disabilities
being equals in creating and
benefiting from a legacy
Dispel the myths
surrounding learning
disabilities, physical
activity, healthy eating
and maintaining a
healthy weight
• Work with partners to develop an
understanding of the myths
surrounding people with learning
disabilities and develop a campaign
and related programme to dispel
these myths.
Influence the physical • Develop a bank of inspirational case
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Area of work Action Links to existing
work
Lead
Organisation
Partner
Organisations
Timescales Progress
activity and eating
choices of people with
learning disabilities
and their carers
studies and individual stories to
advocate and raise the profile of
healthy eating and physical activity
success stories for people with
learning disabilities
PROFILE
Raise the profile of the
needs of people with
learning disabilities
regarding physical
activity, healthy eating
and maintaining a
healthy weight
• Identify methods of raising the
profile of the needs of people with
learning disabilities regarding
obesity, healthy eating and physical
activity and the need to do more
work in this area.
• Identify newsletters and
partnerships that will enable the
profile of the needs of people with
learning disabilities with regards to
maintaining a healthy weight to be
raised.
• Develop briefing papers, articles,
presentations to support the profile
raising requirement of this
framework for action.
• Develop a briefing paper for
commissioner’s on the needs of
people with learning disabilities to
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Area of work Action Links to existing
work
Lead
Organisation
Partner
Organisations
Timescales Progress
support them in
achieving/maintaining a healthy
weight to influence future
programme development.
Influence other
Partnerships in the
West Midlands to
embed a focus on
learning disabilities
and obesity agendas.
• Identify national, West Midlands
and local partnerships to link to and
influence them as appropriate to
embed a focus on learning
disabilities and obesity agendas.
• Ensure that areas of work
determined from this group are fed
into the Regional VPN Programme
Board and Locality Partnerships.
• Ensure the work of the Learning
Disabilities and Obesity group is
available on the West Midlands
Obesity, food and physical activity
websites.
Influence investments
into supporting
children and young
people with learning
disabilities into
physical activity and
healthy eating
• Influence Local Authorities
regarding activity and healthy
eating/cooking sessions being
resourced as part of the Short
Breaks provision for the Aiming
Higher programme.
Support developments • Work with the Change4Life national
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Area of work Action Links to existing
work
Lead
Organisation
Partner
Organisations
Timescales Progress
to the Change4Life
campaign to target this
group in the
community
team regarding the development of
the brand to effectively target
people with learning disabilities and
their carers
• Identify what Change4Life resources
require adaptation to support use
by people with learning disabilities
and their carers?
Copies of this document and others relating to the West Midlands Learning Disability and Obesity programme can be downloaded from
http://www.obesitywm.org.uk/panlinks.aspx?id=OBESITY_LEARNING_DISABILITIES