We asked members what they think about the NHS Long Term plan.

The main points from what they said were:

• People want to know more about what difference the Long-Term Plan will make to people’s lives – the detail on the actions

 

• People told us they want to work with the NHS to make the plan happen – especially self-advocates who can lead training or organisations with particular skills and experience

 

• There were ideas and suggestions for making people’s lives better. Especially on helping people leave specialist hospitals or stopping them needing to go in

We have written a plain English report about this. You can read that here

NHS Ten Year Plan Member Feedback April 2019

 

Learning Disability England is working with 5 self-advocacy or human rights organisations  as 1 of 7 social movements for better health that Nesta is supporting over the next year.

Find out about the other organisations involved and how to be part of this here

 

 

Joe Ulleri – A life that mattered

Joe Ulleri was a much loved member of his family, and of the L’Arche Community where he lived.

He died in 2016 due to bad health care after a fall.

Lots of the hospital staff were kind and good but overall there were problems with the treatment and care he got.

An inquest decided that the problems in his care in the NHS were neglect and part of why he died. Joe’s carers did everything they could to support when he was in hospital.

His up to date hospital passport went into hospital with him, it showed his likes and dislikes, and, crucially, what his dietary needs were.

A 24 hour rota of friends, supporters, volunteers and family were by his bedside throughout his time in hospital.

Yet still he died. The hospital passport was ignored.

The rota of carers was treated as a nuisance. They were not included in decisions about Joe’s care.

They tried to stop the delays and poor communication that were part of his treatment in the Manchester Royal Infirmary but their concerns were not listened to.

Joe died of pneumonia, and lack of food.

He did not get enough food and nutrition or the right anti biotics. This happened in a modern hospital.

We know other people with learning disabilities do not get the right care in hospital and we are hearing more and more examples of when people died because of that.

Joe is a person, not a statistic.

Like all people he mattered and his death matters.

People loved Joe and they have spoken up to remind us that he had a good life and made a difference in his life.

Since the inquest into his death his family, friends and supporters have shared statements and stories about what kind of person Joe was and how loved and liked he was.

They also said that there must be changes in how health services work – no more reports but action now.

At Learning Disability England we read these with sadness and happiness.

We are glad to see people reminding us about Joe as a person. He mattered.

We hope we can all use these words and these examples of services failing to make the most important change of all – a value placed on the important lives of all fellow citizens, with and without learning disabilities.

All people with learning disabilities lives are important. The way care and support happens should be built on that belief.

We also support the work to make health and social care systems better including.

• Mandatory training about learning disability and autism for all healthcare professionals delivered in partnership with self advocates (find out more about that here).
• The work on sight tests, health checks and stopping over medication
• The NHSI Learning Disability Standards

We will work with our members and partners on these

We will also keep helping people with learning disabilities speak for themselves or share the stories that show how their lives are important and must be valued.

One way we are doing that is working with self advocates from across England on building a self-advocacy movement for better health.

We have been talking about the recent news on the actions taken by the police and the regulator (CQC) after the abuse people experienced at Mendip House.

Learning Disability England (LDE) believes that organisations that are responsible for the care and support of people with learning disabilities must act in ways that help keep people safe from all kinds of abuse. If they fail to do that those organisations should be accountable and face significant punishment or sanction.

If organisations are not held responsible when they fail it sends out the wrong messages about the value of people with learning disabilities in society.

As well as organisations being responsible for their part the people who commit abuse should be prosecuted if there are criminal acts, so they take personal responsibility too.

We encourage those organisations responsible for poor care and support to use their failure as a learning experience and do better in the future – but this should be alongside public actions that demonstrate how society does not accept the actions of the organisations or any people breaking the law.

LDE is concerned that the recent decision to only issue a £4,000 fine for the financial abuse that took place at Mendip House falls well short of what should have happened to show how serious this was.

What we know about what happened at Mendip House

In 2016 Learning Disability England learnt about the abuse that had been happening at Mendip House in Somerset. We heard about it from the CQC report on the service. We wrote to the National Autistic Society telling them about our concerns and asking questions about what they had done.

National Autistic Society replied saying they take responsibility for having ‘failed badly’ and would be open about what they were doing to find out what went wrong and how they needed to change how they work.

You can see the letters here

In February 2018 National Autistic Society (NAS) shared an update on what they had done to stop abuse like this happening or to act much quicker when any thing starts going wrong. This was after the Safeguarding Adults Board report came out giving more detail of the dreadful abuse some people living at Mendip House experienced.

You can see the update from NAS here

Last week we heard that the Care Quality Commission (CQC) had fined NAS £4,000.

This fine is for NAS not following the regulations on protecting people’s money.

You can read NAS’s statement on that here

It was also confirmed that no staff or organisations are being prosecuted for what happened at Mendip House.

The member representatives at Learning Disability England have read the newspaper articles and people’s responses on social media.

Like many of them we are left feeling a lot of different emotions –

• Fear that people’s rights are not equal to other citizens if they do not get the same access to justice when they are harmed
• Anger that this can happen to people and was not stopped straight away
• Disbelief that such serious financial abuse only leads to a £4,000 fine
• Worry about the messages this sends to everyone in society about how important autistic people are

What we are doing next

Learning Disability England exists to work for change.

We are left with a lot of questions that we want to find answers to. We will use the answers to help make change happen so people with learning disabilities, autistic people, and their families get access to justice if they do experience problems and people supporting them know the agencies responsible for prosecutions or regulation will act in the best interests of the people they support.

The questions we are asking are

1. Why was there not enough evidence to prosecute?
2. How was evidence gathered by the police or other agencies who do that?
3. Did the people getting evidence use good practice in getting information from autistic people or people who do not use words to communicate?
4. Did CQC use all its powers in this situation?
5. Why has it taken so long for this fine to be decided?
6. What are the rules on sanctions, fines etc.
7. What must happen to result in what sanctions?
8. Did anyone check on what the commissioners organising or buying the support had done and make them change if there were mistakes?

 

We have written to CQC and The Police and Crime Commissioner asking these questions.

Click here to see the letter to police and click here to see the letter to CQC.

About us

You can find out about the Representative Body members and what we do here

Sam Clark has written a short blog about the self advocacy convention in Blackpool in February

On 18th February the BBC released some figures that said there are lots more serious incidents and unexpected deaths in supported living.

Learning Disability England are worried to hear about any unexpected deaths and serious incidents in supported living as we know it is someone’s life.  Seeing how many are reported here makes us very worried, but we are not shocked. We see from the news, from formal reports, and hear from our friends, that too many people with learning disabilities are living a very different life to people without disabilities. Learning disabled people experience far too much different treatment and abuse. Whether this is verbal abuse on public transport, serious sexual assaults in residential care, and everything in between, we know it can happen in every setting where disabled people receive services. We also know that too many people with learning disabilities are dying too young in ways which don’t seem to happen to young people without disabilities. Only a shift to seeing people as fully equal, with rights and lives that matter, will bring about the change we need to see.

Some of the increases are because there are more people living in supported living but even so, these things are happening to people with learning disabilities and they shouldn’t be.
Some of the increases might be because there is better reporting from providers. We think that being transparent about what goes wrong is a good thing but we are worried that some things go wrong because of poor care or not having enough money for care.

BBC File on Four and BBC Breakfast have told stories of poor supported living and 2 stories of good supported living. In one good supported living the money had not been increased for 15 years.

Learning Disability England is worried about the lack of funding for social care because there is £7bn less than there was before austerity. We know that care packages, self advocacy and other vital supports are being cut and having a negative impact on our members.

We know that some of our provider members have reluctantly handed contracts back because they are not well enough funded. What is worrying is that some providers will still take underfunded contracts and cut corners.

We believe that good quality supported living is the right thing to do – we don’t want to return to institutional services. Good supported living follows the UN Convention on the Rights of Persons with Disabilities and includes the principles of the REACH standards and The Real Tenancy Test.  Jayne Knight blogged about those last week click here for Jayne’s blog

We know there are many great examples of good supported living using personal budgets and with providers supporting.

Anyone, with the right support can live in their own home and we do not want to see people being made to live in institutional care because of their high support needs.

We, along with most other organizations are calling on the government to fund social care properly, but it is about more than funding. We want to see a Social Care Future that works in people’s lives and helps them have rich and rewarding lives, so we will continue to support the #SocialCareFuture initiative.

Learning Disability England’s Co Chairs of the Representative Body, Wendy, Scott and Jordan have written to the CQC to ask for more information on the figures presented by the BBC so we can understand what is actually happening.

You can see their letter here

An easyread summary here

We also ask our members to let us know what they think about Supported Living or any worries or questions they have. We will be sharing our work and questions we have too.

We will share the replies we get and what we learn from them.

In December 2018 CQC were asked by the government to look at how restraint, seclusion and segregation are being used in services.

Learning Disability England started talking about this with some of members.

You can see more about what we heard here

We heard from some members about their experiences.

Understanding what is possible and knowing your rights

Joseph and his Mum Claire told us what happened to him as a young man:

Due to a significant personal budget and highly experienced and trained staff, Joseph has had no issues since 2015 and now lives a full inclusive life in his community.

Before then Joseph was verbally abused by a member of staff. When his behaviour escalated as a result, he was physically restrained by 4 people holding him down on the floor. This happened even though Joseph was on the floor anyway. 

The use of restraint did not appear to be remarkable or objectionable to either provider staff or to staff at the local authority. I was given the impression by both that this was acceptable.

Although Joseph’s communication difficulties meant that he spoke very little about what had happened to him at the time, the prospect of returning to unit was very distressing and he refused to stay overnight. It was only years later that Joseph found the words to describe what had happened and the way it had left him feeling.

It was only when I learned about positive behaviour support and the use of restraint did I realise that what had happened to Joseph was not right.

Since then I have tried to have the incident investigated fully, although the results have been very disappointing. It feels like both the authority and the care provider are more concerned with defending the physical restraint of my son by their staff than wanting to prevent this sort of incident from taking place again.     

Joseph remains scarred from his experiences and is still looking to take legal action against the local authority because he believes they did not keep him safe. I am worried that the authority and providers have not learned from Joseph’s experiences, and that other people may experience similar treatment.  

Investing in communication skills

“a lot of the issues that I have seen boil down to lack of communication or not being able to know how to communicate with people who require extra support”

As a support worker Mel says “During my induction week I spent two days learning techniques of physical restraint and I later had regular refreshers either at staff meetings and also yearly.  Yet there was only half a day on communication”

Mark {Mel’s son} is now supported by his local community which includes college and going to his local pub and catching up there with Grecia, bar staff at the Anchor Pub.  She said that if anyone gives Mark a hard time they’re out.

Families should be listened to and respected, certainly if bad practice is taking place.  However, it’s about the individual and for the individual – The 2014 Care Act and wellbeing, like good communication, should be at the heart of it.

Melanie O’Neill has shared her paper on what she has learnt as the Mum of someone with Autism and as a support worker, in organisations

click here for Physical Restraints Vs Communication paper

What we will focus on and work with our members to make happen

Learning Disability England wants more to be done to end the harm these practices are having on people. We know too many people are restrained or secluded or on medication when listening to them and good support could stop the need for those practices.

We think that

• the underlying reasons restraint is being used should always be recognised.

For example, if people are being supported badly or in places that cause them distress their behaviour may show they are afraid. For example, environmental factors may mean autistic people are afraid and lead to them being restrained and then more afraid.

We think this is a failure in services, not the person.

• restraint must be better understood so the difference between a gentle hand on someone’s arm and holding someone against their will is clear and supportive practice and restraint are not counted as the same thing.

 

• it is never OK to accept fully body restraint or long-term segregation and seclusion as part of someone’s support

 

• the focus needs to be on the good support practices we know work for people being supported and the staff supporting them

 

• support staff must get good training, support and ongoing learning on positive ways of working for the people they are supporting now

 

• no one’s ‘behaviour’ justifies this use of seclusion and segregation. The amount it is used shows how wrong our system of support is.

We want there to be more focus on good community services and support for people to live an ordinary life.

Understanding how people communicate and what they are saying through words, signs, symbols or their behaviour is very important for people to live a good life.

We believe developing community supports with skilled staff will help end the restrictive and damaging practices in situations that do not work for people with learning disabilities or autistic people.

 

We will work with our members to share the good ways of working, help others learn about them and support policy or legal changes that are needed.