Independent report

Baroness Hollins' letter to the Secretary of State for Health and Social Care about the Independent Care (Education) and Treatment Reviews

Updated 8 November 2023

This letter regarding the independent reviews of those in long-term segregation is from Baroness Hollins, Chairperson of the Independent Care (Education) and Treatment Review (IC(E)TR) programme for people with a learning disability and autistic people in inpatient settings. It is addressed to the Secretary of State for Health and Social Care and dated 18 December 2020.

The Rt Hon Matt Hancock MP
Secretary of State for Health and Social Care
Department of Health and Social Care
18 December 2020

Dear Matt,

It is just over a year since you appointed me to advise and oversee the DHSC managed programme of independently chaired case reviews (IC(E)TRs) for people with a learning disability and autistic people detained in long-term segregation (LTS). It has been extremely harrowing work. The shocking stories from families that prompted you to initiate this programme were not isolated incidents but have been repeated many more times during the 77 reviews, some of which have been completed virtually during the pandemic.

The Oversight Panel (comprising experts by experience, clinicians, people with backgrounds in housing, commissioning and service provision) has been working with me since June to identify what needs to change to improve the circumstances of this group of people. We have shed more light on why so many people have been placed in LTS and why it has been so difficult to enable their discharge. Most of what we have found out is not new, but the numerous reports already highlighting failures to transform people’s care have clearly not led to the changes needed.

Some of the challenges that we have seen so clearly are:

• past commissioning failures are being compounded by slow and inadequate commissioning responses to IC(E)TR recommendations. Funding disputes continue to cause delayed discharges. There is little evidence of any therapeutic benefit from hospital admission for the people being reviewed, but people’s health, dignity and well-being has been harmed. The panel is particularly concerned that people’s human rights are not being respected, that families are not listened to and that poorly trained and poorly motivated staff and organisations with perceived self-interests are not willing to learn from them

• most of them have histories of past adverse life events and significant trauma but there was little evidence of any trauma informed care and plenty of evidence of people being re-traumatised during their hospital stay. Many had past histories of repeated exclusion from poorly commissioned education and support services that were inadequately skilled and resourced, but which blamed the service user for being a poor fit. For them the use of LTS is just the latest exclusion

• most are autistic people, but the hospital environments were not autism friendly or autism aware. About a third of patients in LTS had acquired a criminal record, often whilst in hospital for assaults on staff or other patients but with no recognition that their behaviour was a consequence of long-standing and inadequate understanding of their needs

• escalation processes following concerns about safeguarding or possible human rights violations raised were too slow

• families are being excluded in several ways, and in most cases, they are not being recognised as essential members of the team responsible for ensuring the persons best interests are being met. They are excluded from receiving regular information and updates about the care of their family member, being unable to check that their relative is safe and being prevented from talking to or visiting them regularly, even though when they do visit they provide comfort and reassurance to their detained relative. Many family members would welcome recognition of their own need for support, both during an admission, but also after discharge when they see more closely the long-term consequences for their relative of being a victim of a dysfunctional system

The above is a summary of some of the recurring themes that these reviews have highlighted. I have enclosed my Thematic Review (Appendix 1) of 26 of the IC(E)TRs, which provides further detail of these findings.

The Panel has concluded that although IC(E)TRs have made a promising start, they need to be strengthened to achieve your ambition for them. In August we requested feedback from commissioners on progress that has been made since the IC(E)TRs. It was reported to us that only nine people have been moved out of LTS and of those four people have been discharged. It was also reported to us that there are several systemic barriers delaying discharge for the remaining 73 people who met your original criteria for this programme. There is no doubt more who have entered long term segregation since this work was announced, but the reporting of segregation is very poor so there is currently no way to know for certain.

That is why I am writing to you to request important and immediate action.

We have identified 7 ‘improvement areas’ based on the findings from the reviews and on discussions with expert organisations. Appendix 2 provides an overview of these improvement areas, and for each it summarises our findings, aims, urgent actions and proposed recommendations. These improvement areas are:

• to improve substantially the quality of diagnosis, treatment and care in hospitals

• to commission, skilled, safe, kind and appropriate person-centred support

• to ensure there is accountability for action particularly by commissioners

• to listen to patients and families, put them at the centre of care planning and ensure skilled and appropriate representation and advocacy

• to make money work

• to continue to provide oversight and independent scrutiny

• other areas and recommendations

We think the disappointing lack of progress reported by commissioners in discharging individuals highlights the complexity of the system in place and the need for the development of longer-term solutions. Our recommendations are therefore divided in Appendix 2 into Column D) urgent and immediate actions and Column E) proposals to be developed for inclusion in a final report.

In order to achieve a step change in the quality of care for people currently in LTS and those admitted in the coming months, I believe the following needs to happen urgently:

1. The development and implementation of a funded pilot using bespoke intensive case management and capacity building teams that will support commissioners to resolve ‘blockages’ in the system that prevent individuals being moved to more appropriate, less restrictive settings, and will problem solve, case manage and build capability and capacity locally

2. The continuation of independent case reviews for all people who are in segregation, including those who were in scope of the 2019 to 2020 reviews and all people who have entered segregation since November 2019 or enter segregation in future. These reviews should be undertaken within 2 weeks of the commencement of segregation and progress of the recommendations scrutinised every three months. Clear and immediate action should be taken on review recommendations with automatic reporting to the DHSC/Oversight Panel if previous reviews have not been acted upon

3. The continuation of the Oversight Panel with current contracts extended (initially to 31 March 2021). During this time the Panel will develop and propose new terms of reference for its continuing role as part of the independent review process and to support the implementation of its proposed immediate actions (in Column D of Appendix 2)

4. The continuation of the Oversight Panel to further develop the detail of its proposals in Column E of Appendix 2 with a view to publishing these in a final report

As requested, the Panel and I have focused on the people who were identified as being in LTS on 5 November 2019. However, if we can get things right for this group of individuals there are wider benefits for everyone currently in ATUs or at risk of being admitted because of the lack of local capability to meet their needs. Members of the Panel consider that almost all of the hospitals currently commissioned are unsuitable- even unsafe- for people with learning disabilities or autistic people and advise that alternative local ways to support people whose behaviour is challenging and/or leading to possible exclusion or placement breakdown should be developed. I would like to share a link to a booklet called Helping People Thrive which was the product of a DHSC hosted good practice workshop in February. This shows just what is possible when we get this right.

It would be remiss of me if I didn’t comment on the impact of COVID-19 on the lives of the people we have reviewed. It’s hard to know the detail but it is likely to have increased the pressures on staff, and we have heard stories of increased isolation for these patients, and even less contact with their families which will be especially poignant at Christmas.

I look forward to your reply and I look forward to continuing to work with the Department of Health and Social Care on the development and implementation of these proposals, as well as feeding into the governance structure on Building the Right Support.

With all good wishes for Christmas,

Professor Sheila the Baroness Hollins
Chairperson of the Independent Care (Education) and Treatment Review process for people with a learning disability or autism in inpatient settings