Gary’s Response to the Marmot Report

Living Together in a Fair Way

By The Institute of Health Equity

The Marmot report (easy read version) is about the difference between the way people get healthcare if they have a learning disability and how people get healthcare if they are not disabled. This matters because people with learning disabilities are dying 15-20 years earlier than their non- disabled peers.  There are many reasons that this is happening, including being poorer than other people, living in poorer housing and being lonely- which are all causes of depression, stress and other illnesses.  This is unacceptable, and things need to be changed for the better.  There needs to be properly accessible, good quality housing and the support to find it.  There needs to be information available about affordable heating and bills.  There are schemes to help with bills, but people don’t know about them.  Independent living needs to be properly funded.  There needs to be somebody put in charge to make sure things get better -a learning disability tsar.

Support to have real friendships and relationships is important as this can help stop loneliness.   Information about clubs and events specially for people with learning disabilities needs to be widely available.

Accessible information about money and financial support also needs to be easy to find.

Many of these deaths could be prevented.  There need to be proper health checks and a health plan, which are reviewed regularly depending on the health of the individual.  Good quality, accessible information about keeping healthy needs to be easily available.  People should be encouraged to join in with some sort of exercise or sports.  People need to keep mentally healthy too.  LDE sent out a ‘Winter Special’ with lots of information about keeping warm and keeping healthy.   There should be community learning disability nurses who are trained to support people in their own community and be a link to other services.

Many people with learning disabilities find the support offered by complementary therapies to be really helpful. This needs to be affordable as many people with learning disabilities don’t have a job and don’t have much money.

People & children with learning disabilities may have other long-term serious health problems, like asthma, which all need the correct care and support.

Good health care and support should be lifelong, which would mean people with learning disabilities could get proper treatment & support and wouldn’t die so soon.

Children with learning disabilities are more likely to have mental health conditions, thought to be a third of these children – this needs to be properly treated, not always with drugs, but talking & practical therapies too.  There needs to be people trained specially to deal with children’s mental health.  Teenagers need specialist services of their own.   1 in 3 children with learning disabilities get free school meals, but this depends on a family’s circumstances.  If problems are treated early, it will save money later on.  Inclusive education should be the norm, where children with learning disabilities are educated in mainstream schools.

Communities need to be trained and set up to be completely inclusive.  People should live in the community and area that they choose and not be kept in hospitals or institutions (ATUs) because there is nowhere else for them to live.

People with learning disabilities have lots of skills that could be used in the workplace, but they find it hard to get paid work.  There needs to be employment fairs for people with learning disabilities. People with learning disabilities should be able to have a real career and receive proper pay for it.  There should be help available if a person with learning disabilities wants to set up their own business.   They are often on very low pay or benefits and are often caught in the benefits trap.  Lots of disabled people are losing their benefits when being reassessed – this causes stress, anxiety and worries and is not good for mental health.  People who are unemployed are likely to be poor, suffering from mental health problems.  There needs to be more further / adult education classes so that people can keep themselves occupied during the day and gain skills that could be used in the workplace.   This will benefit the national and local economy.

People with learning disabilities need help to tackle discrimination as they are more likely to be affected than people with learning disabilities.  People from ethnic minorities, of different genders and sexual preferences with learning disabilities, can be doubly discriminated against.  Dimensions hate crime training of police officers is helping to make people and police officers aware that the bullying and discrimination of people with learning disabilities is unacceptable and can lead to serious mental health problems.  Respond are an organisation who support people with learning disabilities when they have experienced trauma or abuse.

Education of all children needs to tackle hate crime – if they are taught early then there will be fewer problems as they become adults.

Support for people with learning disabilities needs to be properly funded.  People with learning disabilities need enough money to live the life they want – a good life.  Banks and building societies need to make proper provisions for people with learning disabilities so that they can manage their own money.

People with learning disabilities in prison need proper support to help them understand what happened and why they are in prison and avoid coming back again.   An individual approach to support is essential because everyone is different.

There needs to be support for families and friends and those caring for people with learning disabilities as they need help too.  People with learning disabilities need to feel part of a family and a community – in whichever way they chose.

It is good to see that the report includes success stories from around the world and makes recommendations about what should happen next.  Public and charitable organisations need to take part in research and look at good practice around the world.

Solve Sleep-Ins Alliance: MP Response and Survey

In October, the Solve Sleep-Ins Alliance wrote an open letter to ministers as we are worried that essential overnight social care support services are at risk.  This is because the government hasn’t offered enough guidance to help people understand what to expect, or do about the decision that staff who work sleep-in shifts don’t need to be paid the national minimum wage. The letter specifically asked for an explanation about how staff should be paid for sleep-ins and how this will be funded by commissioners. You can read the full letter here.

MP Kelly Tolhurst responded to the letter. You can read her letter in full here. The letter recognised the current situation around sleep-ins as an issue. A key message being that the Department of Health and Social Care is telling local authorities and commissioners they should not be using the Court of Appeals judgement as a chance to radically change their fee-paying practices.

We know this is an issue that matter to all our members. As part of our support for the Alliance we have created a survey to collect the views of Personal Budget holders, people who use Direct Payments and families. We are interested in how the issues around sleep ins are affecting you, your family and staff; especially if funding you receive for sleep-ins has changed.

We would appreciate you taking the time to help us gather evidence to support the alliances’ work. The survey should only take a few minutes to complete.

Take part in the survey here.

Social Care Futures

Including everyone session – Thursday 15th November

Next week Learning Disability England members and some of the team will be part of running a session at the Social Care Futures event

Social Care futures is a get together organised by volunteers and supported by a lot of different people with the aim of sharing what is most important and possible for social care in the future

We are working with the Alzheimers Society and  Dimensions to share examples of how people are being supported to live a good life even though often the service system sees them as having complex needs.

Through the session, we want to share what is working but also work out what it will take for those kinds of support to be available to more people

Tim and Andrew are part of the session sharing what they have been involved in with New Prospects in Whitley Bay.


Building Community, not fighting for inclusion?

Tim and Andrew will share New Prospects work in Whitley Bay on being part of local community groups and working in partnership with people and groups

Some of what they will talk about was in this paper


Everyone in – what this session is about?

The session will share practical examples of how people traditionally viewed as having complex support needs are being supported in a variety of different settings to maintain or build relationships, activities or work with a focus on a good life not only their support or care needs.


About Tim & Andrew

Tim Keilty

With a background in the advocacy movement and training and consultancy, Tim now works for a support provider in the North East – New Prospects Association.  He has learned that; telling people what to do on behalf of someone as an advocate, teaching people what to do as a trainer and advising people as a consultant are all easier than actually doing it…

Andrew Strachan

Andrew is an award-winning volunteer and community activist.  Well known, well respected and well connected.  Andrew is nosey, helpful, genuine and friendly; his brain hosts a web of names, stories and connections – the key traits of a community builder.


A life, not a service?

Jennie and Sarah will talk about Local Area Coordination in York

Jennie Cox and Sarah Charlton are Local Area Coordinators in York. The LAC programme has been running for 18 months in York and has already seen some great impact on people’s lives and futures, including those labelled as having complex needs.

We are place-based, strengths-based practitioners offering person-centred, flexible, support to individuals and families in defined geographical areas. Our roles involve community capacity building to promote greater social inclusion for all. Our roles are also integral to system change in coproduction with several other innovative programmes in York, such as our Future Focus adult social care transformation programme, our Social Prescribing service and the Multiple Complex Needs Network. We are social innovators, expert generalists and specialists in thinking outside the box.