On Friday we put on an event with Oxfordshire Family Support Network (OxFSN), Autism Oxford, and Oxfordshire Clinical Commissioning Group (OCCG) to inform people about what’s happening to services and gather their views on how to make things better.

First, Chris from OCCG and Jan from OxFSN gave an update on Transforming Care.

(For an introduction to Transforming Care, please read this blog post).

Chris said, “Transforming Care will only work if we all work together.”

They explained that:

  1. As well as improving the special care for people with learning disabilities, we need to make all health services better for people with learning disabilities and for people with autism. This includes: doctors, hospitals, mental health care and more.
  2. The general concept is called “mainstreaming.” This means that everyone will use the same services, but adjustments need to be made to make sure everyone has equal access.
  3. There will be “care navigators” to help this.
  4. Some specialist services will still be needed.
  5. We will use technology to help people.
  6. We need to make sure all NHS staff has the skills to understand learning disability and autism, and the confidence to make adjustments to their service.
  7. We need to make sure that services (such as GPs, Hospitals, and where people live) are good and safe. This will include visits by people who use the services and their families, like our Quality Checkers project.

They also gave updates on what they are working on now:

  1. Moving learning disability services to Oxford Health.
  2. Creating an “autism pathway” to identify what services people can access and how.
  3. Increasing and improving annual health checks.
  4. Undertaking a learning disability mortality review, in response to the Mazars Report.
  5. Working on issues faced by children and young people in transition.
  6. We would love you to feed in! Do this by contacting MLMC, OxFSN or Autism Oxford.

The next presentation was by Liz from Oxford Health.

Liz Williams is a Programme Director for Oxford Health. Her job is to move the learning disability services from the management of Southern Health to Oxford Health.

She said she will need lots of help from people with learning disabilities and their families.

She said that the next steps in the process were:

  1. Agreeing the money
  2. Agreeing the model. This will be co-produced with staff and people who use services.
  3. Making a plan to move the services.

The soonest Oxford Health will take over from Southern Health is April 2017.

Somebody in the audience asked what is happening the Slade House buildings.

Liz explained that Slade House was not part of the deal with Oxford Health. She urged everyone to tell NHS Improvement and Southern Health what we think should happen to the site.

Another question was “What are the likely benefits that people will see after the move?”

Liz explained that there are currently two very different systems for community mental health services (run by Oxford Health) and learning disability services (run by Southern Health). She said that bringing both sets of services together under one contract will make a more seamless pathway for people with learning disabilities experiencing mental health problems, stop people being passed from one NHS Trust to another, and make it easier for us to hold them to account.

Another question was “How would you support staff who currently don’t have any training in autism?”

Liz said that Oxford Health know there is a need for staff to be trained about autism, and this has gone on the Forward Plan. She said “I think this is really important. Please hold me to account in a year’s time.”

Then Helen Ward from OCCG gave a presentation about Mortality Reviews

She explained…

The Mazars report found there was not enough investigation of deaths of people with learning disability, and that the NHS is poor at involving families.

The Oxfordshire CCG are reviewing every death of somebody with a learning disability that happened between 1 April 2011 and 31 March 2015. This is just over 100 people.

The stage 1 review found that:

60% deaths = we don’t need to know anything else
5% deaths = there is already an investigation
35% deaths = we need to find out more.
The next stage involves contacting families and producing reviews that will be published by Christmas.

Pam asked “Why isn’t there someone with learning disabilities on the review panel?”

Helen said “The panel has only met once so far and we discussed the possibility of appointing somebody with learning disabilities. We’ll be in touch with MLMC!”

Kirsten Prance and Noel Burke gave a presentation about the Learning Disability Intensive Support Team.

We thought they said some good things, like:

“We focus on someone’s needs and not their behaviour. We listen to them and what they want. We look at their skills and not their disability.”

“People often focus on what isn’t working but we find it’s better to focus on what is working and how amazing someone is.”

“Every behaviour has a function. It’s important to understand why someone is doing something and meet their needs.”

“Putting people in hospital isn’t going to change their needs.”

After lunch we talked about reasonable adjustments…

We asked people on their tables to discuss and make notes about:

“What difficulties have you had visiting health services? For example the GP, dentist or hospital.”

“What worked for you? What didn’t work?”

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