Entry 8 – Beyond the Headlines

Posted in: Journal

Medicine is the science of uncertainty and the art of probability”

William Osler

There has been wide-spread reporting of NHS England’s decision to establish two early adopter services and as a result bring the contract for the Gender Identity Development Service (GIDS) at the Tavistock and Portman clinic to a managed close next Spring. Within this coverage I feel that some of the detail about the key components of the future regionalised service delivery model, that I set out in my latest advice to NHS England , has sometimes been overlooked. 

Medicine is a science of uncertainty in a world where we all want clarity and black and white answers. In medicine, when there is controversy or doubt about treatment decisions, the immediate reaction is to blame individuals, and sometimes organisations. However, the most important way to reduce risk, improve decision-making and manage uncertainty is through safe systems. The purpose of my Review is to be forward-looking and define what a safe system of care should look like, and how to support that care with the best evidence.

In my interim report I said that a single specialist provider model is not a safe or viable long-term option in view of concerns about lack of peer review and the ability to respond to the increasing demand. The purpose of the regionalised model is to improve access, networked care, research capacity and workforce development.

I have previously said that the care of gender-questioning children and young people needs to be everyone’s business, with responsibility taken throughout the health system rather than resting solely with a small expert workforce. The staff working at GIDS have demonstrated compassion and a strong professional commitment towards their patient population. Their experience and continued engagement will be essential in ensuring a smooth progression to the new service model. At the same time, we need to encourage, grow and develop the future workforce that will be key to the delivery of regionalised services.

This challenge is not unique to the NHS; speaking to colleagues in Finland, they describe a similar picture.  When they opened their tertiary level gender identity service, others were reluctant or did not feel they had the capability to work with individuals with gender identity issues. Across schools, social services and local children’s mental health services, staff did not feel that they had sufficient knowledge or expertise to explore gender identity or even address other issues that these young people might be struggling with. I am told that this has now changed completely; other professionals recognise that it is not helpful to exceptionalise gender identity issues, and that they have the transferrable skills to work in this area. There are useful lessons that we can take from their experiences.  

The regionalised services that I have described will be direct service providers, assessing and treating children and young people who may need specialist care, as part of a wider pathway. Alongside this, the regional centres will support networks of designated local services, in what is known in the NHS as an Operational Delivery Network (ODN). I have set out the functions of an ODN in my letter. This model will give the opportunity to provide targeted training, upskilling and additional staffing to a more manageable number of centres within a geography. For children and young people, this will mean improved access to services with flexible pathways that better respond to their individual needs.

Advancement in medicine is all about reducing uncertainty and risk through research, clinical experience, peer review and clinical networks. I have advised that the regional centres should also come together to form a national provider collaborative to ensure consistency of standards and data collection across all providers, as well as providing opportunities for peer review and a forum for discussion of complex cases and/or decisions about medical care. This will mean that whichever centre a young person attends they can expect the same standard of care and better information upon which to base their decisions.

There is still a lot of work to do in addition to the ongoing research programme, which I spoke about in my previous journal entry . I have always been clear that the Review will be an iterative process and that we will release information and advice when it becomes available so that improvement work can begin as soon as there is a clear direction of travel. I am pleased that NHS England has taken on board the Review’s advice to date and has set out the interim arrangements being put in place to move towards the new delivery model. We will continue to work with them and all our stakeholders as the longer-term service model is established.

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