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Our vow to tackle waiting times – Will Huxter

The Chair of the NHS England Gender Task & Finish Group looks at how a finance boost into Gender Identity Services can help tackle delays:

Welcome to my seventh blog on gender identity services, and the work NHS England is doing with the trans community, providers and other stakeholders to improve the experience of people needing support from the NHS.

I have written and spoken before about the unacceptable length of time that people with gender dysphoria have to wait to be seen in a gender identity clinic, and then, should they wish to receive it, for surgery.

I have heard from many people about the negative impact on their health and wellbeing while they wait to be seen, and the sense that their lives are put on hold during this time.  These are all reasons why NHS England has invested more in gender identity services, to increase capacity and reduce waits – and I am personally very committed to continuing our work to tackle this longstanding problem.

For the financial year that started on 1 April 2016, adult Gender Identity Clinics (GICs) across the country, and all the contracted surgical providers, are receiving substantially more money than last year – £2.5m more for the GICs, and £2m more for surgery.

The biggest percentage increase in referrals across all gender services in 2015/16 was for the children and young people service run by the Tavistock and Portman NHS Foundation Trust, which saw a doubling of new cases last year.  As a result, their contract has increased by over £2m, from £2.6m to £4.8m per year.

The additional money is accompanied by increased transparency about the national reporting of waiting times, and explicit expectations from commissioners about bringing down waits.

Recruiting and training new specialist staff is time-consuming, as there can be a long lead-in time from having the money to increasing the capacity.  But the new investment is recurrent, and there will be more to follow in 2017/18 as capacity and activity increase.

NHS England specialised commissioning teams are agreeing concrete plans with individual providers to make a real impact on waiting times, and we will take an overview of this at the national Task & Finish Group, seeking confirmation that good practice is being shared and implemented across all providers.

On waiting times, the national NHS England ‘frequently asked questions’ guidance on recording and reporting waiting times has been updated to remove any ambiguity about the application of the 18 week rule to gender identity services, and to ensure consistency across providers.

The document has been published on the NHS England website.

For people referred to GICs, the clock measuring how long someone is waiting starts when the GIC receives a referral, and stops when first definitive treatment starts.  For people then referred for surgery, a new clock starts on the date that the referral from the GIC is received, and stops when surgery has taken place.

We are working with the Elective Care Intensive Support (ECIS) Team and each of the GICs to improve how waits are currently recorded and reported, and to ensure we have a common understanding of what constitutes first definitive treatment.  This will include on-site visits by the ECIS Team.

I have explained to the providers that we need to ensure that reporting systems are fit for purpose as soon as we can, so that waiting times for gender identity services can be reported nationally and published, in the usual way as for other clinical specialties.

The continuing increase in the number of people with gender dysphoria seeking support from the NHS confirms the urgency of our developing the workforce to respond to current demand and to ensure sufficient numbers of suitably trained and experienced staff for the future.  This was the focus of our most recent symposium with other organisations.

I am pleased to say that we are scoping a piece of work with Health Education England (HEE), looking in particular at the workforce in terms of the specialist skills required to support a gender identity pathway; curriculum issues related to preparing people to become gender identity specialists; and developing awareness and skills for all and any staff in the wider NHS who interact with members of the trans community. I’ll keep you posted on progress with this important initiative.

GICs are subject to scrutiny by the trans community, commissioners and regulators, including the Care Quality Commission (CQC).  The CQC is undertaking a programme of visits to all the GICs, as part of a focused inspection.

The report on the visit to the Charing Cross GIC, undertaken in January this year, was recently published.  The report highlights problems which the GIC is looking to address, in particular long waiting times, administrative systems, and lack of clarity for some people about how to raise complaints.

The CQC also identified areas of good practice, and noted that most of the feedback they received directly from people who used the service was positive about the quality of care and treatment which was delivered.  I will refer in future blogs to CQC reports on the different GICS as they appear.

I hope that this blog contains useful information.  Please let me have your comments and thoughts via Twitter at #NHSgenderid

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14 comments

  1. jerry luke says:

    Thanks for this Will

    I totally understand your wish to look at this as a problem of specialised commissioning, but you must be careful not to commission gaps in service.
    This level of specialised service is clearly not in core GP work. We are happy to work with GICs but CCGs will need to provide resources to enable transfer of work from specialised (tertiary) work to generalist (primary) care. Without those resources we will have to refer all work to secondary care. NHSE has a part to play in ensuring CCGs provide adequate resources.
    I agree with the GMC that it is good for GPs to acquaint themselves with changes in medical practice, but this will not happen overnight and GICs will have to play a part in ensuring all patients have access to appropriate management.
    I heard of a GIC that said they could not prescribe anything but only offer advice. Surely this is not correct as we would expect specialists to initiate and stabilise specialist prescribing before asking to share care with GPs.
    This is what happens with most specialist medications and it would be discriminatory to offer transgender patients a lower standard of care

  2. Jerry Luke says:

    Dear Will
    Thank you very much for your reply.
    On Wednesday at the Transgender equality forum you mentioned several times getting the service specification right for the Gender Identity Clinics.
    As a large part of the provision of care is likely to be via GPs can I ask what GP input you have formulating the service specifications?
    In particular do you have RCGP and LMC input? RCGP for education and quality, LMC for contract management.
    I’m sure you will agree that getting this right at the start of the process will prevent gaps in service appearing later

    • Will Huxter says:

      Dear Dr Luke

      Thanks for your comments.

      It would be great to get wider engagement from general practitioners and other primary care professionals. The Clinical Reference Group for Gender Identity Services has had representation from the Royal College of General Practitioners in the past when working on previous commissioning documents, and we do seek views from interested stakeholders (including professional bodies) on proposed service specifications and clinical commissioning polices through stakeholder testing and public consultation.

      The eventual service specification for gender identity services will describe the specialised elements of the transgender pathway which are the responsibility of NHS England specialised commissioners. The specification cannot, of course, address the wider problems that we frequently hear from transgender people about their experience in primary care.

      Kind regards

      Will

  3. Jerry Luke says:

    So, this blog encourages people to offer replies. But the responses, which were once infrequent and vague, have now entirely lost their existence.
    It would be better if the blog did not offer the option to leave replies, than patients were ignored.
    Alternatively Will and the team could set themselves some targets for offering a substantive reply within a defined period of time. I think this may be beyond the ability of NHSE

    • Will Huxter says:

      Dear Dr Luke

      Thanks for your reminder that we should be responding to posts in a timely manner, which we aim to do, and I’m sorry if this isn’t always possible. The feedback that we get from individuals and organisations about these blogs is very positive, and I’m very encouraged that this is proving to be a constructive conduit for sharing ideas and genuine concerns.

      Kind regards

      Will

  4. Holly Black says:

    As ever, no hope is extended to transsexual people who have no Identity or Dysphoria problems. The only route available to British transsexual people remains overseas surgery and application for a GRC under 1(1)(b) of the Gender Recognition Act (which does not require medical evidence).
    The NHS should follow the lead given recently by Denmark and depathologise transgender identities so removing Identity Disorders for transfolk from the local version of the ICD. Transfolk are not mentally disordered and psychiatry has no legitimate role in their treatment.

    • Will Huxter says:

      Dear Holly

      Thanks for your comments.

      Certainly, NHS England’s approach to commissioning gender identity services recognises that transgender is not a mental disorder. We have been clear that gender identity services should be led by multi-disciplinary teams, and that the psychological and psychotherapeutic elements of the service are there to provide tailored support to each person as part of an individual care plan.

      If you wish to provide me with more detailed information of your concerns please feel free to write to me at NHS England, Southside, Mezzanine Floor, 105 Victoria Street, London SW1E 6QT.

      Kind regards

      Will

  5. Melanie says:

    This is great news. But I am concerned about the statement that “the clock measuring how long someone is waiting starts when the GIC receives a referral”.
    In my case, my GP (understandably) admittedto not knowing much about gender dysphoria and transsexuality, so she consulted the CCG.
    I believe the CCG badly misled her, because instead of referring me to one of the proper GIC’s, she referred me to a one-man band, run by a single Consultant psychiatrist.
    After several months waiting for my appointment with him, he saw me once, for about an hour, and then referred me to a proper GIC.
    While I was waiting, the queue at the GIC had lengthened, so I believe the unnecessary “detour” lengthened my time from GP to HRT by almost a year.
    I don’t know whether this was caused by ignorance on the part of the CCG. What I fear is that it may have been deliberately engineered by them — possibly as part of a misguided attempt to cut costs.

    • Will Huxter says:

      Dear Melanie

      Thanks for bringing this to my attention, and I’m sorry to learn that your experience has been unsatisfactory so far.

      From what you have described, the GP and CCG should have taken advice from NHS England’s regional commissioning team, as this is a service commissioned directly by NHS England, and not the CCG. I think the issue you raise highlights why we are working with the Gender Identity Clinics, professional bodies and patient groups to raise awareness amongst GPs about the appropriate referral path to try and prevent these sort of problems occurring in the future.

      Kind regards

      Will

  6. Peter Moore says:

    Dear Mr Huxter
    I have a few important issues with regard to the service that my son is receiving from the GIC clinic at Charing Cross.

    Please can you provide your latest Address that I may send you a letter, or your E Mail address.

    We have written to the service manager at the Clinic on the 11th April, and haven’t even had an acknowledgement to our letter.

    I have tried ringing the clinic, to speak to the Service Manager and it is like trying to get through the Berlin Wall, before it was knocked down.

    If you have time for a face to face, myself and my son are more than willing to come to London

    Hope to hear from you soon

    Kindest regards

    Peter Moore
    Hope to hear from you Service MANAGER AT TEH gic ON THE

    • Will Huxter says:

      Dear Peter

      I’m sorry to hear of your poor experience. Please feel free to write to me at NHS England, Southside, Mezzanine Floor, 105 Victoria Street, London SW1E 6QT.

      I have also brought your comments to the attention of the service at Charing Cross.

      Kind regards

      Will

  7. Michael says:

    The administrative problems highlighted by the CQC at Charing Cross directly affect patients’ wait for substantive treatments. It is currently standard practice for Charing Cross patients to receive verbally approval for hormone therapy at an appointment, but to wait 16 weeks after the appointment for the letter to tell their GP that treatment may be commenced.

    Daventry Gender Identity Clinic is currently insisting in correspondence and on its website that it is not funded by NHS England to offer non-binary patients any treatment at all. This seems to be out of step with all other GICs in England, and indeed with previous NHS England gender identity symposiums where better support for non-binary people has been discussed and supported. Is NHS England aware of this issue, and is it taking steps to address this?

    • Will Huxter says:

      Dear Michael

      Thanks for your comments.

      On the waiting time issue, the amended waiting time guidance that we have published aims to avoid the situation to which you refer. In future, the Gender Identity Clinics must commence “first definitive treatment” within 18 weeks of the date of referral. As I’ve said in previous blogs, it’s unlikely that we will be able to achieve total compliance with the 18-week standard as quickly as we would wish given capacity constraints such as workforce shortages, but we are beginning to turn things around through significant additional financial investment and a coordinated national approach to addressing capacity constraints.

      On the non-binary issue, thanks for bringing this to my attention. I have a convened a joint meeting of the Gender Identity Clinics for later this month, and I will include this issue on the agenda. I will report on the outcome in a future blog.

      Kind regards

      Will

      • Michael says:

        Dear Will.

        I think you have misunderstood my point. I am not referring to the 18 week wait. I am referring to the fact that even once patients reach a gender identity clinic and have had an appointment, they then wait(at the London clinic) for a further 16 weeks simply to get a letter from the clinic confirming what happened at that appointment. So a patient who has already waited 14 months for an appointment then has that appointment and must then wait ANOTHER 4 months for the gender clinic to write to their GP with details of the assessment, any treatment proposed etc.

        I appreciate doctors cannot be trained instantly, but surely there is not a national shortage of admin staff who can type up letters? The constraint here is funding, and also Charing Cross’s inadequate computer system

        Michael