Learning Disability England members responses to consultation on Mental Capacity Act changes and priority areas of concern

What this is about

Depriving someone of their liberty is one of the most serious things the state can ever do to it’s citizens. It means that even if you can tell people what you want, you can’t decide for yourself things like what you want to do, or where you live.

Sometimes it is right to take away people’s freedoms, for example if someone has done something bad like attacking another person, then there will be what is called a trial. A trial looks at what happened, and what everybody says they think happened. Then a jury decide whether someone is guilty or not. That means they think the person did do something wrong and can be punished. If they have done something very seriously wrong, the person might be sent to prison. It is very important that this decision is made by what is called a jury of your peers; that means people who are like us. Everyone gets to be judged by a jury of their peers. It is a very important part of the law.

Sometimes disabled people don’t have the choice to make their own decisions. This can be because decisions are made about us, without us, by people like social care commissioners, or care home managers. In the past, decisions about disabled people were usually made that way, but these days most people know better and try to make sure they think about what the disabled person wants and needs. The person deciding about you should ask you what you think and feel, and if you can’t speak for yourself, they should ask your family, friends or advocate to help them find out what you like and want.

The government are thinking about how these decisions should be made, especially for people who can’t decide for themselves, or who might be what is called a risk to other people. That means that someone might hurt another person without meaning to, or without understanding what they have done. Usually when someone hurts another person, it will be the court and jury who decide what should happen. But, for some disabled people that decision can be made about them, without a court. We think that is a form of discrimination – it means disabled people are treated differently from other people, because they are disabled.

What we have heard from members about these changes

 At LDE we asked our members what they thought about these decisions and changes. We found out that everyone agreed some of these changes would be bad. Often disabled people, families and providers disagree a bit, but everyone agrees some of these changes would make things worse than they are now.

Everyone was worried about the manager of a service being the person who decides about the disabled person. Learning disabled people are especially worried that this will be like going back to the days of the institutions. All of our members who told us what they think about this said it should be an independent person who gets to make decisions. Otherwise it will be like the judge, jury and gaoler being the same person. There won’t be anyone to help, or to appeal to if you don’t agree with the decision.

Our members, Sunderland People First said

There is a risk that we take away people’s independence and giving power to people that may not be doing a good job – look at Winterbourne View.

Disabled people and their families are especially worried that there is no requirement to consider the persons own wishes. That is how the institutions were. This would be bad enough if there was an independent assessor. We can’t think of another group of people this could happen to, even people who have committed terrible crimes get to have a lawyer to speak for them and a judge to decide what happens next. Our members, Grace Eyre Ambassadors told us very clearly,

We do not want to go back to the days of the institutions!

We were all worried about the change in language to describe people as being of ‘unsound mind’. Learning disabled people and their families don’t really understand what this is supposed to mean. There’s no precise definition, it’s stigmatising and it doesn’t make any sense. We think people who do things like throw themselves out of planes on the edge of space to set records are probably of unsound mind, but people support them to do what they want to do. We don’t understand how this would apply to people with learning disabilities.

Some family members said they thought that if a disabled person is going to be deprived of their liberty because of worries about the safety of others, then it should always be the Court of Protection to decide that. One parent of a young adult with learning disabilities and autism told us

Families still have precious little influence in the care of their loved ones. Access to the Courts is expensive and time consuming – and providers know that. These amendments will make a poor situation even worse and make abuse of power by providers much more likely

What we are doing next

We will make sure what members tell us is fed back to people making decisions on the law, the policy leads in government as well as sharing it with other groups and organisations who are worried about the changes to the law too.

LDE are working with other organisations to join up on what we agree to share ideas, influence more and be a stronger voice together.

We will keep in touch with members on this

You can find more information and an easy read guide to the planned changes on Mental Capacity here

Demand for urgent government action on sleep in crisis

Essential overnight social care support services are at risk because of government inaction over sleep-in payments, according to an open letter to ministers published today.

The letter signed by care, health and education organisations urges the government to clarify how sleep-ins should be remunerated.

A recent court of appeal judgment overturned a previous decision that would have resulted in sleep-in staff being paid minimum wage for shifts, leading to a £400m back pay bill for care providers. However, Unison has now lodged an appeal against the most recent ruling, creating renewed uncertainty for employers over retrospective and ongoing costs.

Without clear information on the long-running sleep-in payments saga, the letter warns, commissioners and providers may move in ad hoc ways, something that would threaten the provision of a vital night time service. The ongoing lack of clarity affects not only care provider organisations, but individuals using personal budgets or direct payments to employ and manage support staff.

The letter also stresses the existing fragility of the social care market, with adult social care facing a £3.5 billion funding gap by 2025 just to maintain existing levels of provision.

The letter urges the government to:

  • clarify its position on sleep-in payments
  • confirm that the current legal position means employers will not face potential HMRC retrospective action to recover underpayment of national minimum wage for sleep in work
  • work with organisations to produce information so that people who use services and their families, the workforce, employers and commissioners understand how sleep-ins should be remunerated
  • work with providers and local government on a sustainable funding solution that will ensure care workers are valued and fairly paid.

We know this issue matters to all of our members as they want support workers to be recognised for the valuable job they do and the funding levels to reflect that. It is particularly a worry for the staff affected and for employers who manage their own staff through personal budgets. Learning Disability England are in touch with people who help manage their family members manage their personal budget. This on going uncertainty is threatening the stability of their support teams as one person told us how concerned they are their daughter’s social care will be cut if the Council thinks lower rates can be paid for sleep ins as this will put us at risk of losing long standing staff some of which have worked for her daughter for 8 years.

We hope the government will act to make this clearer and fairer for the people supported, the staff themselves and the organisations employing support workers.

The letter prepared for the Ministers can be accessed here

Please click here for a response from Kelly Tolhurst

MacIntyre Charity is recruiting an Operations Director

Location: Milton Keynes

Hours: Full time 35 hours a week

Salary: £72,000 dependent upon experience

Car allowance: £5,000 per annum

MacIntyre is quite unique in the range of provision for both children and adults. MacIntyre provide education to 200 students in four schools. Three of these schools are Academies schools developed by MacIntyre Academy Trust and one is an independent special school. For more information visit our webiste www.macintyrecharity.org .

Click to download recruitment pack

The Continuing Healthcare Information Research Project

Learning Disability Members Update on NHS Continuing Healthcare,

September 2018

From LDE member rep Alison Giraud Saunders

Definition – what this is about

NHS Continuing Healthcare (NHS CHC for short) is funding from the NHS for a complete package of health and associated social care needs. Eligibility depends on whether a person is assessed as having a ‘primary health need’. The assessment of eligibility takes into account the nature, complexity, intensity and unpredictability of the person’s needs.

In March this year I reported back to Learning Disability England about work the Department of Health and Social Care had done to update the National Framework for NHS CHC. Since then a team in NHS England have been working on how to improve the way NHS CHC works for everyone. This team is called the Strategic Improvement Programme (SIP). They ask voluntary organisations, including Learning Disability England, to comment on some of their work.

On 30 August the SIP held one of their consultation meetings to talk about the NHS CHC workforce – the skills and the training that local NHS CHC teams need. Lots of us said they need to include:

  • Really listening to people who are experts about their own lives and support needs
  • Listening to, involving and respecting families
  • Communication and capacity
  • Understanding ‘enough’ about different conditions that people may have – so they know who else may need to be involved to give specialist advice
  • Proper understanding about personalisation, including personal health budgets
  • Understanding that NHS CHC isn’t just about health care, but about a complete package of support.

They also talked about a new website they are planning. This will bring together in one place all the information people might need. I asked if there would be easy read information, and also if there would be information for young people (and their families) as they move into adult life. They are thinking about it.

NHS England is paying for some work to be done to find out whether people get good information about NHS CHC. There is an online survey, which should take about 10 minutes. You do not have to give your name.

If you have experience of NHS CHC, you can take part in the online survey until 30 September 2018 by clicking this link: https://www.smartsurvey.co.uk/s/CHCinfo


If you would like to download this information please click here

What we think about the government’s response to the Learning Disabilities Mortality Review (LeDeR) programme

This is what the 3 Co-Chairs of Learning Disability England’s Representative Body think about the report from the government.

We thought about what our members have told us about these issues and what is important.

It is good to see the government say how it will act on the recommendations. We are very pleased because not hearing anything can make people think that people with Learning Disabilities dying younger than non-disabled people is not important.

We think there is a lot in the plans to make us think the government are taking this seriously, but we think there are some things missing.

How people are treated could still not change even with the actions in this report. We think people’s attitudes and how people in organisations think altogether are at the heart of what needs to change.

For example, it is good that the report talks about joining up health records saying, “these records should include information about a person’s medication and any allergies or adverse reactions to medicines that they may have”. We know though that people and their family members are often not listened to so changing the records could still mean people do not get good care or even die. One time this happened was when Paula McGowan tried to share information about her son Oliver with doctors and nurses responsible for his care, but she was not listened to and Oliver died.

We think that there needs to be action to make sure people with learning disabilities and their families are listened to and taken seriously. We saw that this report talks about learning and that is good, but it does not talk about listening to people.

Training for staff is a good thing and we support that, but we think it must be developed and led by self-advocates and family members. This can help change what people think about people with learning disabilities and help staff take them and their families seriously. If it is training delivered by self-advocates face to face it can help people, make the changes to how they act not only understand the policy or the theory.

The report says there will be an oversight group that includes self-advocates and families but it does not say how the targets will be checked and who will decide if the changes to how services run, and staff act are happening. We would really like to see people with learning disabilities and their families as equal partners in setting those targets and deciding if change is happening the right way.

A good healthy life means everyone working together with people with learning disabilities, family members, support and health providers. National and local leaders taking responsibility is important in this too. We think that bringing those people together can bring good solutions.

We want the government to set a date by when they hope people with learning disabilities will not die up to 29 years before non-disabled people.

Our main points are:

  • It is very good the government are taking action from the Learning from deaths reviews so far
  • The actions being taken are good we think
  • These actions could still mean the most important changes still do not happen. Policies depend on how people act towards people with learning disabilities and their families
  • We think the most important changes to make are in how people are respected and listened to by all staff and services
  • We want the training to be developed and led by people with learning disabilities and their families
  • We want people with learning disabilities and families to be part of checking the changes are actually happening
  • We want it to be very clear how and when the changes will mean people will stop dying earlier because of poor care


Find out more about this

The government have written a report saying what they will do after the 2nd annual report of the Learning from deaths review (LeDeR)

You can read the report here


You can read the Learning from deaths annual report here


Learning Disability England wrote to the social care minister about the delay in the government acting on this

You can see that here   https://www.learningdisabilityengland.org.uk/news/action-to-stop-people-dying-early/ 

Questions we have been asked about our governance after the CMG Tribunal decision

What we are doing about to answer those questions

  1. What this is about

The policy Registering the Right Support says what kinds of services the Care Quality Commission (CQC) will register for people with learning disabilities or autism.

Last year the Care Management Group (CMG) wanted to change the numbers of people supported in a service in Essex

CQC said they could not make the change because the service would not follow the policy or principles in Registering the Right Support.

CMG challenged that decision and took CQC to a Tribunal to decide if their decision was right.

On Thursday 23rd August the Tribunal said it supported CQCs decision and CMG changing the service would not be in line with the policy or principles set for future services.

Some people said that this was a good decision, because it makes it clear to organisations and commissioners what kind of services they can develop for the future.

There are some services that CQC say are ok for now, but they will not be good enough for the future, so they will not support developing more of those.

  1. The questions about Learning Disability England and this decision

Learning Disability England shared the information about the decision on our social media and we will put it in our newsletter because we know it is an important decision. We hope it will mean that providers start to think differently about how supported living could work better for everyone.

Peter Kinsey is a Trustee of LDE. He is also the Chief Executive of CMG.

When some people read the tribunal decision, they asked us questions about LDE. The questions were asked by people who are families and allies of people with learning disabilities. These people know a lot about what bad, and good, support looks like. At LDE we think it is really important to think carefully when people ask us questions. We think that if we can do that then we can all learn something and find better ways to do things.

They said they are worried that if LDE has a Trustee who is also CEO of an organisation that provides the kind of service described in the tribunal decision, this makes LDE less reliable and not an organisation people can trust.

Since then people on social media have asked questions about

  • LDE’s policy on what kind of people or organisations can be members of LDE
  • Who can be part of the groups that run LDE and are there things that might mean they cannot or have to stop.
  • Why is everyone on the LDE Board someone who leads a support or housing organisation
  • Why LDE have not agreed a way of dealing with the issue of a Trustee when a service they manage at work has been criticised by CQC, when the Tribunal has been going on for months
  1. How Learning Disability England works

Learning Disability England is a membership organisation that started in 2016.

People with Learning Disabilities, Family members and allies and organisations of all types and sizes can be members.

Learning Disability England exists to

  • try to bring together groups of people who have worked on their own in the past
  • to do more or have more influence by people joining together and learning from each other

The legal rules say the Representative Body will be made up of 12 people who represent the members and work with the Trustees to lead and check on the work of the organisation.

The Representative Body started their work in September 2017 after 12 people were elected by members. LDE is trying to develop ways of working that share power and decision making with the people who represent our members leading how we make decisions.

The 9 Trustees from the Housing and Support Alliance stayed on to help LDE until the Representative Body could lead finding new Trustees. LDE started looking for new Trustees in August 2018.

  1. What Learning Disability England is doing about these questions

The Representative Body and Trustees think that the issues raised by the Tribunal, and the questions asked by people on social media are serious ones.

Our answers will make a big difference to how Learning Disability England is trusted by people or works in the future. Our answers and actions need to be well thought out and based on our core beliefs and shared values.

The Representative Body and Trustees are going to take some time to think about these questions, to make sure everyone involved in making decisions can think about, talk about and agree what Learning Disability England should do next.

We’re not starting from a blank page. Learning Disability England supports the Registering the Right Support policy and CQC putting it into practice. Also Learning Disability England’s Representative Body has already done some thinking about the issues brought up in the Tribunal. So far, the representative body has focused on what LDE should do if a member organisation opens a hospital or runs a dangerous or abusive service and does not do something to put it right straight away

The Tribunal raises different issues, and LDE must think these new issues through in the same careful and considered way we’ve done before.

We now need to work out if LDE wants to or can-do quality checks on new and current members.

We also need to agree more detail on what kind of things an organisation or group, or individual would need to do for us to tell them they could no longer be a member.

Finally, we need to agree what action we take if something happens at a volunteer Trustee or Rep Body member place of work that we do not like or agree with.

We want to give all 20 people the chance to be part of making these decisions based on the role they have as Representative Body member or Trustee.

The Summer holidays are slowing us down a bit, but some of us have been talking about this over the weekend. We will carry these discussions on this with everyone as they come back from their holidays. We will do this as fast as can without making it hard for anyone to be included.

By doing this LDE wants to be open and share what we think about and decide and not rush but feel confident that LDE is doing what we said we would when we said how we would work

If you want to talk about this you can contact Sam Clark on Samantha.clark@LDEngland.org.uk or 07823 536603

If you want to tell us what you think as a member we would be very pleased to hear from you on this or anything else.

To download this statement please click here

More information

Peter Kinsey appreciates the concerns raised by LDE members. He has said that he is very happy to talk to or meet with anyone who would like to speak to him about CMG’s tribunal. His e-mail address is peter.kinsey@cmg.co.uk.

Planning for the next 10 years of the NHS

Meetings about how people with a learning disability or autism will be included in the plan

People with a learning disability and people with autism are included as one of the important priorities for the NHS in the next 10 years.

NHS England are working with Learning Disability England to hold 7 meetings to talk about what needs to be in the plan.

The ideas for the plan will be based on the work so far and what people have said is important or needs to happen next.

The meetings will talk about the work that has happened so far on making health services better, Transforming Care, Learning from deaths reviews (LeDeR) and other important work.

We will talk about what has worked and what hasn’t, as well as the evidence from research or numbers.

Below you will find more details about these events:

If you would like to use the links in the document above to register for an event, please click here to download the word version.

Update: All events have been fully booked. We are sorry if you wanted to come to a meeting and were not able to get a place. We have a waiting list for all the others. NHS England has decided not to make the events bigger and there is not time to run anymore before the plan has to be written at the end of September.


LTP webinar on the 17th Sept 1-3pm

The NHS has been asked to set out a long-term plan for its future by Autumn 2018. This will involve setting out its ambitions for improvement over the next decade, and how it will meet these plans over the five years of the funding settlement.

As autism has been identified as one of the top clinical priorities for the NHS, we would like to invite you to take part in this webinar which is part of a wider conversation about how autism will be prioritised in the NHS England Long Term Plan.

To register, please use the following link: https://bit.ly/2oPxrZ2


NHS England have set up other ways of contributing:

discussion guide on developing the long term plan for the NHS, is available from NHS England. This guide is also available in easy read. The guide is intended to help stimulate ideas on three key themes – life stage, clinical priorities and enablers of improvement.

It highlights some of the key challenges and some questions that NHS England would encourage you to answer through their online feedback form.

You may choose to provide responses for every topic, or just the ones that are important to you or the group you work with feedback needs to be submitted by Thursday 30th September 2018.

NHS England ask that you fully complete the first page of the survey so that they know who they have heard from. If you have any questions, please email Long Term Plan Engagement Team: england.ltp@nhs.net

If you prefer to view this information in a plain english format please click here

If you would like to see a update about this 10 year plan, please click here

Become a Trustee at Learning Disability England

Learning Disability England is looking for new Trustees to help run and guide the charity with the Representative Body.

We are looking for up to 6 new Trustees to join the Board of Trustees between October 2018 and October 2019.
We are planning for new Trustees to join over a year to help give a smooth handover. Our current Trustees have supported Learning Disability England since it started so have a lot to share with new people joining the Board.

We expect 3 Trustees will start later this year and another 3 in the middle of 2019.

The Representative Body and current Trustees have written an information pack that tells you about being a Trustee and the skills and experience we hope people might bring to the Board of Trustees.

You can download the information pack here and the application form here

Trustees information pack Final

If you want a Word version or this or have any questions please get in touch by e mail on mariana.ortiz@LDEngland.org.uk or phone on 0300 201 0455


Possible appeal against the High Court decision on sleep-ins

The union, Unison have asked for permission to appeal against the decision that was made on what people should be paid for sleep ins when supporting people at nigh . The High Court decided in July that Mencap did not have to pay its staff National Minumum wage when they do a sleep in – this decision affected the law for everyone who is paid to do sleep ins or employ people.

Unison have asked for permission to appeal against this decision and challenge it (so it could change what people have to be paid)

You can find out more from Anthony Collins Solicitors page Here

We will share information as we get it

Find information on the original decision by the High Court – Here

Learning Disability England are part of the #solvesleepins alliance

Action to stop people dying early

On Monday the Care Minister Rt Hon Caroline Dinenage MP sent a written statement to the House of Commons about the Learning Disabilities Mortality Review (LeDeR) annual report recommendations published on 4th May 2018. The statement said the government are still working with NHS England on what they will do.

Learning Disability England’s Rep Body Co Chairs have written to the Minister telling her about the worry, frustration and anger lots of people feel that there is more delay in acting on the recommendations that can help people live good lives that do not end earlier than they should. They also tell her about some of the good work we know about that is working in partnership with people and their families to make a difference for good services and staying healthy.

The letter also includes a film clip from Jenny Carter, Lifetime member of Learning Disability England talking about self advocacy as an important part of making these changes.

Please see below the letter the LDE Representative Body have today sent to Rt Hon Caroline Dinenage MP

Letter RT Hon Caroline Dinenage MP

We also want to share and help connect up what you think is good and the government and NHS England should know about as they develop their action plan. If you have questions you want our members to ask the Minister or people working on this or tell us something you think is making a difference please tell us