Is This Right for Me

Is this right for me?

Report from the regional forums to the TCAB

Good information

In the North West the network is continuing to work closely to coproduce plans providing many opportunities for people to get involved and informed.

Easy read versions of the Greater Manchester and Pan Lancs plans have been written and circulated including via a Facebook page ‘Transforming Care in the North’.

The North West are working hard to widen the network of people they can connect with and their reach has doubled in this quarter through connections with more local groups in each of the 33 CCG areas. They now have a connection is every area who has agreed to share information locally.

They have developed a one page information leaflet for experts by experience to leave with in-patients and families so they know how to find out more.

The North West are reporting that there is still a long way to go and one of the concerns raised by self-advocates and families has been that it feels they now often know more than paid people locally.

Whilst those people with learning disabilities and families linked into the wider work via the regional forums are becoming more knowledgeable it is fair to say that very few people with learning disabilities who are not linked into the wider work have not heard of Transforming Care or know what is happening locally. The North West are working hard to change that via the routes outlined. Part of this issue is that the people that attend the confirm and challenge meetings are quite often not the people most directly affected by the work in relation to bed reduction. Most people have not, and never will, spend time in an Assessment and Treatment Unity.

Experts by experience have attended well over 400 CTRs in the North West this year and have developed ways that support those patients and their families to have the chance to learn more about Transforming Care at the CTR to enable better links.

However the North Westhighlighted that they are still looking at how they better link to hear the voices of children/ young people and their families who are not involved in any meetings.

All the people who come to the coproduction network meetings know more about Transforming Care and have been actively involved in developing local Transforming Care plans, but the challenge now is to reach wider.

One issue is that lots of individuals and families now get such little support that they are reluctant to use the support they get to attend meetings.

The North West have developed social media to reach a wider group of people who don’t want to get involved in meetings.

In the West Midlands self advocates that are involved in their local Learning Disability Partnership Board or Regional Forum knew about Transforming Care.

Other people with learning disability had little knowledge. They said it was all very long winded and complicated. This made it difficult to understand.

Similarly to our April report people were still saying

“We don’t understand what Transforming means.”

The Eastern region reported that lots of people including professionals have heard of Transforming Care, but they don’t at first always realise it is the same as the “Post Winterbourne” work. We find it useful to always refer to Winterbourne View when talking to people about Transforming Care. Hertfordshire is working hard to involve Housing, Police, and Providers and to support wider understanding.

In Stoke-on Trent, the commissioners are speaking to Reach, the local advocacy work, about ways to involve people in this work.

The West Midlands noted that they had some comments from groups who had not understood Transforming Care that they had done some research, as a result of the questionnaire developed by the regions, and that this had resulted in self-advocates understanding what Transforming Care was about now.

Families in the West Midlands said they knew about Transforming Care, but not what was happening locally. They all said they would like to know more.

In the East Midlandspeople that attend local Partnership Boards are informed of Transforming care work this usually includes information on who is leading this work and the numbers of people that are in assessments and treatment units.

This is a complicated area to understand and even when people have been given information it is not always something they remember or can relate to.

Most of the people and families who responded in the East Midlands they did not know about Transforming care, who is leading and numbers. Most people did not know what an assessment and treatment unit is. It is something they have no reference for.

In Hertfordshire lots of people and families who are interested in Transforming Care do know the people who are doing the work, mostly because of roadshows that have been run and following the recent training for CTR panel members. (However there was a mental health professional at the training day who did not believe it when told that the Improving Lives team and CQC had found people who had been locked up without being allowed out for many years and who were being given “care” through hatches. Other professionals had to assure her that this had actually happened.)

Some self-advocates in the Eastern region felt that they weren’t being given information

They said they didn’t know about Transforming Care not because it was especially different but because it was the norm that people with learning disabilities are not given information – “they (bosses) do this to us all the time”, “they may do a bit but not in a good way and that’s the same if it’s about institutions, health services, housing, money. It’s usual that those at the top (staff) get information but never to those at the grass roots”

Twenty five self-advocates completed questionnaires in the Eastern region. The breakdown was:

10 from self advocates in a self advocacy group:

This group answered the questionnaire and it resulted in them saying they wanted to meet people that Transforming Care is about.

3 self advocate who go in to Assessment and Treatment units and work directly with people in those units

7 people in medium secure services

1 person who sits on a local Transforming Care Partnership Board

1 person in prison who has recently moved from an ATU – here the Prison service had no knowledge of Transforming Care and the person in the prison could end up going back into the mental health system

3 people who have moved from services into the community and have a CPA and who are probably on the ‘at risk register’ but who do not know whether they are or not. They had not heard of this register.

All 25 people did not know there is an ‘at risk register’

People with learning disabilities and/or autism in secure settings knew what a Care and Treatment Review was but did not necessarily use that terminology.

There is confusion about who is entitled to have a CTR, self advocate supporters had been told everyone in an ATU could have a CTR but nurses on the wards had said not everyone could.

People do not know what their rights are

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People having a CTR were not aware that people involved in their CTR were there as ‘Experts by Experience’ or what that role was.

Most of the Experts by Experience were family carers and who were brought in from London. There were no known experts by lived experience, people with learning disabilities and/or autism, who were involved in CTR’s.

Self advocates said they haven’t seen posters in hospitals about Transforming Care or Care and Treatment Review, there hadn’t been anything on the news that they recognised as being part of Transforming Care and there was no Easy Read explaining any of it.

In addition 10 self advocates from another area in the Eastern Region had not heard about Transforming Care and were unable to progress the questionnaire.

1 other person had been to a local roadshow but had said they did not understand all that was said “it went over my head”

2 people had heard of a ‘risk register’ at a meeting but were not able to say what it was

5 people had been at a Learning Disability Partnership Board where a presentation on Transforming Care was given, at the time they had found the information useful and helpful but were unable to pass the information on to other people. The presentation talked about ‘numbers’ involved, some of who else was involved and about forthcoming plans.

“It’s not like ‘Valuing People’ or ‘Valuing People Now’ where people with learning disabilities are able to say what that is about.”

Both areas have said generally information in Easy Read is poor. Although some attempt has been made to inform some people some of those people although being given a presentation have been unable to relate what the information and programme of work really means. It feels like something that is happening but ‘over there’ not ‘here’.

2 self advocates have attended 2 other local meetings where ‘assurances’ are given that Transforming Care is happening in the area but they do not know if that really is the case.

Self advocates have asked for a simple Easy Read leaflet on Transforming Care but they haven’t received this.

Again self-advocates in the Eastern region thought Transforming Care is something else – to do with Adult Care services ‘changing services’ or ‘transformation’ work.

In Yorkshire and Humber and the North East they spoke to 106 people about their experience and knowledge of Transforming Care. This highlighted:

• A lack of knowledge about Transforming Care and why it was important;
• A lack of accessible information;
• A lack of co-production.

To follow on from this work both regions held several discussions and met in York to look at the best way to tackle these issues.

The teams in the North East suggested to move forward it would be good to see the TCP plans for the Yorkshire and Humber Region.

There is only one TCP in the North East and some members of the North East Forum had been involved in their plan through their local Confirm and Challenge Group.

As a group they decided that we wanted to find out what the local TCPs plans were for Yorkshire and Humber and how they planned to engage people with learning disabilities and their family carers in this work.

They would then collate this information and plan some regional events to ensure people who used services and TCPs were working together.

In addition to this they would check back with people who have learning disabilities and/or autism at the Yorkshire and Humber Regional Forum on the 20th of June to see if people knew more about Transforming Care.

At the end of May they sent out an email to the NHS England Fast Track Team in the North who agreed to send out our email across the TCPs in Yorkshire and Humber.

They gave the TCPs 3 weeks to reply; however, as the deadline approached (17th of June) they had not received any responses. When they chased this with the Fast Track Team they apologised and had said they had not had time to send this information out due to their heavy workload but kindly shared the TCP lead emails which was then sent out. They extended their deadline by another two weeks (1st of July) but only had one response.

On the 1st of July they held a skype conference to discuss how we could move forward without the info from the TCPs.

They agreed to facilitate 4 Transforming Care events in partnership with family carers, people with learning disabilities and Gavin Harding (2 for Yorkshire and Humber and 2 for the North East).

These events will happen in October. They have set up a steering group of 2 carers, 2 people with learning disabilities and regional co-ordinators to plan these events over the summer. Gavin Harding from NHS England has also said he would like to help plan these events so they are not duplicating work.

Feedback from the Regional Forum:

35 people with learning disabilities and/or autism attended the Yorkshire and Humber Regional Forum on the 20th of June. Self-advocates from Rotherham, Sheffield, Doncaster, Kirklees, Leeds and Bradford came to this meeting.

As part of this forum they asked people if they could tell us what had happened in their areas on Transforming Care since the last Regional Forum forum. Gavin Harding from NHS England’s Transforming Care Team also came to the forum and spoke to people about the Masterclasses he is planning to run.

This is what people told us:

• Since the last forum everyone said they knew more about Transforming Care. This was great!
• Some people had been asked to sit on their local Transforming Care Board.
• Some groups had asked for an easy read version of the plan. Some TCPs (eg. Rotherham) were in the process of doing this.
• In Rotherham, Sheffield and Doncaster and North East Lincs the TCP has put aside a pot of money to co-produce plans with people with learning disabilities and their family carers.
• Kirklees and Bradford self advocates were going to ask their TCP to do the same.
• One self-advocate said that although she knew about Transforming Care her brother, who was under Transforming Care, still didn’t know about it or his rights. Everyone agreed more needs to happen on this.
• There is still an issue with Co-production especially where funding cuts have meant that there is not as much self-advocacy.
• Everyone agreed that there should be some regional events in partnership with NHS England to look at Transforming Care and Co-production so that everyone is working together and work is not duplicated.

Local people working together

In Hertfordshire, this is definitely the intention with the Partners in Improving Lives group, which will include people and families who have direct experience of in-patient services.

There is already involvement of families in the Crisis Care project and another in-patient project called Lomakatsi, which encourages people to take part in art, drama and music therapy to improve their daily lives within services.

Recent reports have stated that someone who had not spoken for 7 years has started talking again, and another person has started playing the piano again, after years of not engaging with any previous pastimes. Attempts are being made, at the request of families, to roll this out into the community for people who are being discharged, or to seek similar opportunities for activities when they are discharged.

The Eastern region have now trained around 30 people and families across the region as Experts byExperience or clinical advisors, and continue to do so whenever they are asked, which helps raise awareness. Opening Doors in Norfolk have an in-reach peer advocacy group (2-3 people) visiting people in hospitals, and Inclusion East have recently been asked about CTR training for people in Suffolk

In the North West the regional forums have links to family and self-advocate groups in each CCG/Local Authority area and have encouraged and supported these groups to get involved in developing local plans and monitoring progress.

Information is shared with all the groups and experts by experience have offered to visit local groups to brief people.

As highlighted in the Good Information section there is concern that people who are currently in-patients and their families may not be involved as much as others.

In the East Midlandseveryone who responded though it was important for self-advocates and family carers to be involved in planning, however this not what people say is happening.

Family carers and some self-advocates are involved in Care & Treatment Reviews which feeds into the transforming care work.

In the West Midlands self-advocates have said that people were not involved because it was too complicated. One person commented that the local authority did not want to spend the money to make information accessible. Another comment was that austerity was a problem. Services and support were being withdrawn.

Some did not know if their group had been invited.

Again there appeared to be a lack of information, especially in easy read.