If you want to go fast, go alone. If you want to go far, go together”African proverb
It has been a while since I’ve written a blog and you may have been wondering what the Review has been doing. There is a lot going on, both within the Review and beyond it. Some activities, while not the direct responsibility of the Review, do nudge up against our work and may have an effect on support for young people in the future.
The Review’s focus is on the long-term model. However, as the interim service begins to take shape, I have a responsibility to ensure that this vital work, which I know is happening at pace, remains focused on the comprehensive, patient and family centred service the Review has outlined.
Towards the new service
I have been pleased to see the progress that NHS England is making in establishing the interim service with the Phase one providers. I know that standing up new services from scratch is challenging, and progress has not been as fast as many people, including NHS England and the providers themselves, would have wished. Despite this, I have been impressed by the expertise and enthusiasm of the clinical staff who are coming together to deliver a strong and supportive new service which will work collaboratively across the different hospital sites around the country.
I previously emphasised how important it is for the new regional centres to communicate in two directions. They need to come together as a collaborative to share clinical protocols, research, and training, so that no matter where in the country a young person is seen, they should encounter the same high standards of evidence-based care. They also need to work closely with local services and agencies, within the NHS and externally, to ensure that young people are supported at all levels in the system; this will improve triage and prioritisation of need, and ultimately improve access to specialist services for those who need them.
There has been some public debate about the importance of training for staff in these new providers and I am taking an interest in how this develops, given the influence that this will have on the operation and culture within the service and ultimately the experience of the children and young people accessing the service. From my perspective, as Chair of the Review, it is vital that the emerging clinical and managerial leadership team within the new providers has oversight of the programme to ensure that both the training and the trainers adhere to the frameworks, values and approaches that they are developing. I am sure that in the near future there will be a training needs assessment of staff who will be working in the new services. Many of these clinicians will bring transferable skills and expertise and the needs assessment should inform development of the training programme to ensure that it is tailored to the evolving workforce. The training programme should be flexible and iterative, with the option to draw in experience from a wide range of experts in relevant related areas, in order to ensure that a holistic approach is maintained, and that the newest research is translated into clinical practice.
It will take a while to build the whole network of services, so to start with the access to care may not seem very different, although it will be spread across more providers. However, even though it will take a while for the broader system to change, the aim is to have more holistic services which can cater for a wider range of needs than was possible within a single highly specialist service.
Towards the Review’s final recommendations
The information which will inform my final report and recommendations is coming from a number of sources (more to come on that shortly) but for now I want to say a bit more about one aspect of the research programme – the systematic reviews that the research team at the University of York is conducting.
A high-quality systematic review is described as the most reliable source of evidence to guide clinical practice. The purpose of a systematic review is to deliver a meticulous summary of all the available primary research in response to specific questions. Systematic reviews adhere to a strict scientific design based on pre-specified and reproducible methods.
One part of the systematic review work has involved looking at papers which describe models of service, assessment frameworks, and assessment tools. The research team has also done a systematic appraisal of existing clinical guidelines and an international survey of clinical services in other countries with comparable health systems. There are several other systematic reviews looking at social transition, psychological therapies, outcomes of medical intervention and changing epidemiology. The systematic reviews will be written up and peer reviewed and the findings will inform the Review’s final report.
The systematic reviews will not give all the answers, and some informed decisions will have to be made about how to use the emerging findings. To help with this, I have brought together a group of professionals from a wide range of clinical backgrounds, representing various professional bodies and areas of expertise, as well as representatives from each of the Phase One provider organisations. This has enabled immediate discussions about how the new providers can incorporate the emerging research findings into their service.
In parallel to this, the Review has commissioned a series of focus groups with young people with lived experience to look at the aspects of service delivery that are most important to them. Again, this insight will be fed back to the new providers to help inform service development.
I am also staying abreast of the literature and of international developments. As stated in my letter to NHS England (July 2022) there are still critically important unanswered questions about the outcome of hormone treatments, and so far, nothing has changed my view that the infrastructure should be set up to prospectively enrol young people being considered for hormone treatment into a formal research programme with adequate follow up into adulthood. The most pressing questions relate to the use of puberty blockers, and a number of other countries have reached the same conclusion. Some have recommended that puberty blockers should only be available in the context of a research protocol, or, pending such a protocol, prescribed in exceptional circumstances. Several of these countries are keen to work with the NHS to address the unanswered questions collaboratively and I have suggested NHS England makes those links as it develops its approach.
Some of you will recall that the Review has commissioned a data linkage study which will use existing data to track the journeys of young people referred to the Gender Identity Development Service (GIDS) through the system. The aim is to provide a population-level evidence base of the different pathways people take and their outcomes. It is always better to do ‘prospective’ research (research which enrols people at an early stage and follows them up) than ‘retrospective’ research (research that tries to work out what has happened to people after the event). However, prospective research takes longer to give answers, so by combining these two approaches, the Review hopes there will be some more timely answers.
The next few months will be a busy time as the Review works towards a final report and recommendations, but I will aim to keep you updated, and alert you to any further developments.