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 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

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:


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:

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 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