Care and Treatment Review Audit Response by Tony Phillips (Expert by Experience)

I have been contributing to CETR/CTR panels at community, low, medium and high secure levels for the past 7 years for a number of regional NHSE teams and have completed over 600 individual reviews for a wide range of young people under 18 as well as adults. Whilst I am an expert by experience, I am also a social worker (retired) with 35 years experience in the LD and ASC sectors and was for 25 years the director of a user-led development charity piloting individualised services, community development projects and social enterprises run by and for people with an LD and/or ASC.
I remain with the charity as a trustee.

The following responses to the draft CTR Review are largely based on the reviews I have attended commissioned by regional CTR teams with additional comments based on my broader experience, especially where the subject matter relates to wider systems issues and problems with inter-agency collaboration.

On the role of Advocacy

With the introduction of IMHA (Independent Mental Health Act Advocate) and IMCA  (Independent Mental Capacity Act Advocate) roles, Advocacy services have developed over the past 20 years into a formalised service that can mask the need for relationship-based representation. In many of the reviews I have attended there has been no active advocacy involvement although advocates have often been named and/or  were in attendance. Outside of the London area, advocacy services appear to be contracted for specific interventions or for ‘instructed’ support.

There appears to be a national shortage of advocacy services that are contracted to provide long term, independent relationship based support.

On hospital discharge outcomes

There are serious issues around the lack of community based options and a hesitancy to commission bespoke support packages that lead to tier 4 hospital admissions extending into ‘containment’ scenarios following the completion of treatment programmes. This has been particularly noticeable where 52 week education placements are being sought for young people with difficult to manage behaviours or for young people and adults with autism and sensory needs where environmental control is essential.

It should also be stressed here that when I first started doing reviews, I expected to see a vast majority of bad practice and this is the current stance taken by Mencaps ‘Making it Happen’ campaign. In reality I have found that over 90% of the reviews I have undertaken reveal staff and their services doing the best they can in difficult circumstances. There have been some dreadful exceptions to this, needless to say.

On best practice guidance

The main issue here continues to be the anomaly of autism being largely seen as a mental health issue under CAMHS services rather than a life long reality better conforming to the a model of service provision where continuity, environmental control and lifestyle planning are all core values. CAMHS services in London reviews and those throughout the UK work better when they have at least one specialist Responsible Clinician (RC) and/or senior staff member with autism experience. The same is true for Mental Health acute wards.

On CTR recommendations being followed up

The problem here is that operational responsibilities can be allocated on a named basis only when a case is already allocated.
In many situations the action point is for a referral to, for example, social care or, even more frequently in my experience, a decision needs to be made at Director level and there is a reluctance by panel chairs and members who are not fully independent to name and shame.

On commissioning bespoke services

There appears to be a national hesitation in agreeing the criteria for commissioning bespoke services for both young people and adults who clearly require certain ‘givens’ listed here as:

• relational security – key risks managed by staff matched to the  persons profile

• continuity – quality of life and self-managed behaviours by limiting unplanned change

• environmental control – not living with other people that create trigger behaviours or places that do not provide matched sensory conditions (noise, light, open space and other factors)

• Lifestryle support based on including positive ‘rituals’ and key interests

There is also clear evidence from both London and UK reviews that despite years of systems change, the medical model of learning disability and autism still carries more weight than the social model in the way clinicians work and the way services are commissioned.

There remains an inherent belief amongst self-advocates, families and professionals that hospitals and CAMHS are there to make you ‘better’.

I have lost count of the number of Education Health Care Plan’s (EHCP) that have sections D and H left empty or with the phrase ‘there are no social care needs identified’ even when s.117 of the Mental Health applies requiring comprehensive discharge planning by all agencies applies or a full programme of support is funded for a young person whilst at school but nothng even considered to support the family out of school hours other than a crisis team number.

On including the person in their own review

Much more can be done to include the person in their review but the starting point has to be the way the role of a CTR panel is explained in the first place. Existing materials are useful in this respect but it is very clear from my reading of hundreds of CTR consent forms that the person usually has little of no real understanding of the role of the review and sees it as just another bunch of professional-looking people asking questions. Suggestions to improve this include:

• default continuity of panel members where ever possible

• commissioning relationship based advocacy services to provide continuity

• filmed submissions facilitated by trusted staff members or advocates Identifying gaps in care

On making effective recommendations

There are some serious systems issues acting against the best interest of the person and their family that are impossible to highlight in the report  format, for example:

• We still have a split response to children and adult service provision in health, social care and education policy. All children will become adults. This must become a fundamental planning principle or we will continue to see ineffective EHCP’s’; patchy transition services for young adults post 16; no default offers of personal budgets to families with disabled children under 18 and other wholly created systems failures.

• People with autism continuing to fall between the gaps in Mental Health and Social Care services because of a lack of coherent eligibility criteria

• The broader planning assumption that any two people with a learning disability and/or autismwill want to live together or even spend time together

• Lack of coherence in the Ministry of Justice and wider health and social care world around risk management in the community when compared with people with similar support needs who go through the prison system without coming under hospital transfer orders

 It should be noted here that when I was asked to help design Expert by Experience training in 2014 and become a panel member I was reluctant to engage because of what I saw as the toothless role of the reviews and the panels themselves. Having been used to advocacy based follow-up and social care casework, I thought the lack of prescribed individual follow-up built into the reviews would make them tokenistic and effectively mask systems issues that needed serious attention.

I still have those concerns and am now also noticing a tendency to focus ever more closely on the role and fuction of CTR panels rather than address the many serious issues that CTR panels have highlighted and provided clear evidence for over the past 7 years.

Comprehensive Information, advice and guidance remain a rare luxury for the majority of self-advocates and families I have seen in over 600 reviews in the past 7 years. The growth in specialist services has led to a highly fragmented service sector with most professionals isolated in their own particular part of the health, social care and education worlds. Organisations tend to want to protect themselves from criticism by deflecting attention away from obvious issues to relatively safe targets and the CTR process is an ideal target of this type.

It goes without saying that even within the non-existing statutory framework that CTR’s occupy, there are improvements that can be made but the serious question posed here is this – are there or there not serious issues in the way services are commissioned and run that have been repeatedly highlighted and then confirmed by successive waves of CTR reports over the past 7 years? To any of us who have been on panels for that length of time, the answer is a resounding ‘yes’.