The CQC responded in February 2019 stating that it would: ‘use the information you have provided as part of our wider picture of the gender identity development service to help us plan when we should next inspect the Tavistock and Portman NHS Foundation Trust and what we should look for during that inspection.’
In the report it states that following further ‘concerns reported to the CQC by healthcare professionals and the Children’s Commissioner for England’, in October 2020, the service was inspected and it was indeed found to be ‘inadequate’, the lowest ranking achievable.
As a result, the CQC has taken enforcement action against GIDS under the Health and Social Care Act 2008 by imposing a condition upon its registration. This requires the trust to report to the CQC on a monthly basis so they can monitor progress on the reduction in waiting times and the other areas in which GIDS was found to be lacking.
The following legal requirements were identified as not having been met. The provider must send the CQC a report that says what action they are going to undertake in order to meet the following key requirements:
Need for consent
Safe care and treatment
The timing of the publication of this report is interesting as it comes in the wake of the determination made against the Tavistock by the court in December 2020, yet the ruling is not referenced in the CQC’s published findings.
The waiting times were highlighted as a serious concern with 4,600 people on the list and over a quarter of young people waiting more than two years for an appointment. The legal requirement is 18 weeks from referral to treatment.
With only 28% of people who are referred to GIDS going on to be referred for medical treatment, a key question remains: what happened to those patients who did not go on to receive medical treatment of any kind?
If we compare this 28% with a 2019 study published by the Amsterdam Clinic, their figures showed that of over 1000 youth referred to their gender clinic, an average of 85% were diagnosed with gender dysphoria and 78% of those went on to have blockers and/or hormones.
What happened to the 72% of patients referred to the Tavistock that did not go on to the medical department? Did they go elsewhere for treatment, to private providers such as GenderGP? If they were discharged from the care of the Tavistock as they did not meet the criteria for gender dysphoria, were they truly not trans at all, or were they dissuaded from seeking help in any way?
Could it be that their diagnosis was missed altogether or worse that their gender variance was dismissed, in what could be classed as conversion therapy by any other name?
Another concern raised by the CQC findings is the length of assessments. Although the service specifications state that there will be between three and six assessment sessions, of those young people who were referred for medical care nearly 1 in 5 people underwent 25 or more assessment sessions. It was not stated how much time passed between these sessions.
The CQC also found that there were significant variations in the clinical approach of professionals and it wasn’t clear why certain decisions were made. This fits with the public view that we hear from patients who describe a situation in which ‘it depends on who you get as your clinician as to how you are treated’.
There was serious concern identified about risk management, in that although risks of both suicide and self harm were identified, risks were not adequately assessed or managed. The safety of patients of any age is of course of paramount importance, and any service provider must ensure that any actual or potential risks that are identified to a person’s health or safety, are managed swiftly.
The CQC found the service to be ‘inadequate’ and has placed legal enforcement measures on GIDS, but a crucial question remains as to whether the service is able to make the required improvements in waiting times and service delivery and if so how this will be achieved.
If it cannot, perhaps now is the time to call for a new system altogether, an option which we explore here.
THE INSPECTION FINDINGS:
Areas identified for improvement:
The service must ensure that it meets the needs of young people who are referred to the service.
The service must ensure that young people referred to the service do not have to wait unacceptable lengths of time for a first appointment.
The service must ensure that plans for care and treatment are established and clearly recorded on care records.
The service must continue its work to ensure that assessments of capacity, competency and consent are recorded for all patients referred for medical treatment.
The service must ensure that staff assess the risks to all young people and record these risks appropriately.
The service should ensure that it continues to develop its multi-agency support and protection for young people, including the development of joint protocols and information sharing agreements.
Key Findings of the Inspection:
‘Twenty-eight percent of young people assessed by the service were referred to endocrine clinics for medical treatment.’
‘The specification for the service states that clinicians would assess young people during a course of between three and six sessions. Data from the trust shows that young people attended, on average, 10 assessment sessions. Eighteen percent of young people referred to an endocrinology service between March 2019 and March 2020 attended 25 or more assessment sessions.’
‘Whilst the criteria for considering referring young people for administration of hormone blockers was set out in the service specification, we saw no reference to this on any patient records. Although decisions about referrals to endocrinology were taken by at least two clinicians, it would be very difficult for the service to assess whether clinicians had made the correct decision in making a referral.’
‘the service carried out an audit to see how many young people had received an assessment using the Children’s Global Assessment Scale (CGAS). The audit found that 97% of young people who had been discharged between April and June 2020 had received an assessment using this tool. The audit showed a small increase in the average CGAS score from 63.1 at the initial assessment to 66.4 at a pre-discharge assessment. This meant there was, on average, a small increase in patient’s global functioning during their treatment, although this did not indicate a significant change.’
‘The service was difficult to access. There were over 4600 young people on the waiting list. 26% waited over two years for their first appointment.’
‘The service did not have the resources to sufficiently address risks associated with gender dysphoria of young people on the waiting list.’
‘Staff did not always assess and manage risk well. Many of the young people waiting for or receiving a service were vulnerable and at risk of self-harm. Despite this staff often did not assess the risks presented by young people and their families. Staff did not create plans to manage risks.’
‘We found examples of young people who had made suicide attempts, young people who were vulnerable to sexual exploitation and young people who had a history of inappropriate or high-risk sexual behaviour.’
‘The service relied on the child’s local support agencies, such as CAMHS or the GP, to address serious risk issues that arose whilst the patient was waiting. However, some parents we spoke with said the support they had received from CAMHS was not relevant to their child’s needs associated with gender dysphoria.’
‘This meant that whilst serious risks to young people on the waiting list were managed by local services, who were in themselves stretched, young people’s needs associated with gender dysphoria were often not being met and less serious risks were not addressed.’
‘Two records for patients presenting a high level of risk did not include evidence to demonstrate that GIDS staff were fully involved in multi-agency meetings.’
‘The size of the waiting list meant that staff were unable to proactively manage the risks to patients waiting for a first appointment.’
‘records reviewed did not sufficiently record the needs of patients with autistic spectrum disorders. The service did not record how many patients had a diagnosis, or suspected diagnosis, of an autistic spectrum disorder.’
‘For those young people receiving a service, individual risk assessments were not always in place with plans for how to manage these risks.’
‘One record had very little information about risks, despite the referral letter stating that the young person had frequent suicidal thoughts and had previously harmed themselves by cutting.’
‘The number of patients on the caseload of the teams, and of individual members of staff, were high making caseloads difficult to manage and placing pressure on staff.’
‘Staff did not develop holistic care plans for young people.’
‘Staff treated young people with compassion and kindness. They understood the individual needs of young people and supported young people to understand and manage their care, treatment or condition.’
‘A young person said they found the process invasive and they felt staff had misunderstood what they were saying. A parent said they felt like they were being pushed into doing things they didn’t want to do.’
‘Records of clinical sessions did not include any structured plans for care or further action.’
‘Staff did not sufficiently record the reasons for their clinical decisions in case notes.’
‘There were significant variations in the clinical approach of professionals in the team and it was not possible to clearly understand from the records why these decisions had been made.’
‘Between March 2020 and October 2020, the service conducted 6360 consultations. Only 7% had involved face-to-face meetings. The service did not refer young people to the endocrinology service unless the young person had met a therapist in person.’
‘Staff had not consistently recorded the competency, capacity and consent of patients referred for medical treatment before January 2020. However, since this date these decisions had been recorded.’
‘Assessments of capacity, competency and consent had not been recorded in accordance with the established procedures in eight of the 11 records reviewed.’
‘The multi-disciplinary teams supporting the young people did not always include the specialists required to meet all the individual needs of patients under their care.’
‘Staff did not always work well together as a multidisciplinary team.’
‘Whilst staff participated in clinical audit, they did not always act on the findings of audits to make improvements where needed.’
‘The service had rapid access to a psychiatrist when needed. The service had an urgent concerns protocol. This protocol included arrangements for an on-call rota for psychiatrists who could see young people urgently.’
‘Staff did not always feel respected, supported and valued. Some said they felt unable to raise concerns without fear of retribution.’
‘The service was not consistently well-led. Whilst areas for improvement had been identified and some areas improved, the improvements had not been implemented fully and consistently where needed.’