From Left to Right: Kari Gerstheimer (Mencap), The Rt. Hon. Matt Hancock MP, Bethany's Dad Jeremy, Paula Webb and Sally Russell OBE (PDA Society)

From Left to Right: Kari Gerstheimer (Mencap), The Rt. Hon. Matt Hancock MP, Bethany’s Dad Jeremy, Paula Webb and Sally Russell OBE (PDA Society)

Today, Bethany’s Dad, Jeremy, met with the Secretary of State for Health and Social Care, The Rt. Hon. Matt Hancock MP. The Minister wanted to hear more about Bethany’s story, what could have been done to prevent her from being kept in ATU seclusion for so long and how improvements can be made. Jeremy invited representatives from Mencap and the PDA Society to support him and to give the Minister a view on the wider issues, and the meeting was also attended by a representative of Jeremy’s MP Preet Gill.

We all recognised that Transforming Care is an important policy which should have changed the experience of care for those with autism and/or learning difficulties but that it has not yet worked as it should. There are many reasons for this, already documented, including a workforce that isn’t equipped to work in partnership, doesn’t have the right expertise and is pitched against financial imperatives.

It is encouraging that the Secretary of State is seeking to make changes through the NHS 10-year plan and the commitment to a consultation on mandatory autism training. NHS England campaigns such as ‘Ask Listen Do’ and STOMP are encouraging clinicians to do the right thing and there has been funding for information resources to help parents know how to engage with in-patient units. The Government’s clarified position on PDA is also welcome and it is hoped that CCGs will adopt position statements on PDA.

However, in our analysis, a lack of services to meet the needs of this group is at the heart of the problem:

  1. Appropriate services don’t exist: whether that’s in the community to stop hospital admissions, giving the right support when people are there or having suitable placements for them to move on to
  2. We have a clinician-led system: those clinicians often don’t truly understand autism and focus on the presenting mental health issue (top-down) rather than creating an autism-friendly environment (bottom-up).
  3. The Mental Health Act allows detention of people with autism and/or a learning disability who show behaviour that challenges. Its safeguards are inadequate, its tribunals are ineffective and it traps people with autism and/or learning disabilities, many of whom may not actually have mental health issues, for years in a system that is not designed to meet their needs.
  4. Funding does not follow the patient. This means that discharge can be delayed as local authorities resist the cost of a care package moving to them when in-patient costs are being met by the NHS.

Bethany’s case highlights the failure to understand the needs of autistic people, especially those with atypical profiles like PDA, and people with learning disabilities.

It should be understood that in-patient units do not provide a therapeutic environment for improvement and can be harmful, causing trauma for those with underlying (and often unrecognised) conditions. Individuals are remaining stuck in these units, often for years, and can be subjected to highly restrictive practices such as seclusion, use of restraint (including prone restraint) and use of anti-psychotic medication even when they are not diagnosed with mental health problems.

The Secretary of State was asked:

  1. to support Bethany’s timely move to community accommodation (he was thanked for his promised investigation into her care)
  2. to promote urgent expert input for other current cases of concern
  3. to commit to continuing the Transforming Care programme beyond March 2019 with modifications to take account of the issues which have hindered progress to date
  4. to engage with the Dept for Education and the Dept of Housing Communities & Local Government so that there is collective planning and accountability, including an investment in appropriate community care
  5. to ensure that the proposed mandatory training includes atypical autism profiles such as PDA and that NHS England commissioners are also trained in the PDA profile
  6. to promote enablement rather than containment by including autism input to in-patient care (please see our new Keys to Care for PDA document designed especially with in-patient settings in mind but applicable for all).
  7. to develop a new workforce that is better geared up to deliver individualised care
  8. to focus on prevention, with early identification and intervention
  9. to empower families, who have expertise by experience
  10. to consider the appointment of an Autism Tsar to provide visible leadership and create momentum for change.

The Secretary of State Matt Hancock MP said: “It was good to meet Bethany’s father Jeremy for what was a frank and heartfelt discussion about his daughter’s care. I made clear the NHS is working to improve her difficult situation as quickly as possible. I want to see a big reduction in the number of people in these types of facilities and have ordered an urgent review into Bethany’s case and the use of seclusion more generally. Improving the lives of people with learning disabilities or autism will be a key part of the NHS’s long-term plan backed by an additional £20.5 billion of funding a year by 2024.”