Over the last few weeks lots of trans people have been asking me one recurring question.
"What is going to happen to the care for trans people under the NHS when everything gets reorganised in April?"
A variation on this question is, "How are people going to be able to influence that care?"
It is understandable, given the historical experiences of some people, why fears should be raised.
Until 1999 trans people had no legally assured right to expect care for their gender dysphoria on the NHS.
The case of A.D.&G. vs North West Lancashire Health Authority established through the High Court (and then again at the Court of Appeal) that it was unlawful for NHS organisations to operate policies which amounted (directly or indirectly) to a blanket ban on funding referrals for such treatment.
Even after that case was won, many cases have surfaced over the years where local NHS commissioners have sought ways to ignore the case law and obstruct access to such care.
Different Primary Care Trusts evolved widely differing policies, where they had policies at all.
And they contracted haphazardly for different kinds of treatments to be covered, and often for too few referral places, leading to long waiting lists.
In some instances patients have waited for years just to receive a first appointment. Helping such patients often had to involve legal action. And, faced with the potential costs of such action, patients sometimes decided that they might be better off using that money to pay privately for the care they wanted.
As we are about to see the biggest reorganisation of the NHS's commissioning structure since the 'commissioner-provider' market based system was created, it is inevitable that people should be worried about a whole new set of unknowns.
The old system
In order to understand the changes you need to be aware of how gender identity services have fitted into the NHS until now.
The established 'care pathway' for people expressing distress about their gender has always begun with the patient's General Practitioner (GP).
GPs generally have very little specialist understanding of this kind of need, so the first thing they would do is refer the patient to the local Community Mental Health Team (CMHT).
Gender Identity issues aren't a mental illness; however the role of local mental health professionals has been to ensure the patient is mentally well (some psychiatric illnesses can include trans-like experiences) and to stabilise any conditions such as clinical depression before referring the patient to a specialised Gender Identity Clinic.
There aren't many Gender Identity Clinics in Britain. Certainly, few areas have one on their doorstep. The other reason why local mental health professionals are involved is because it is generally expected that referrals to such 'tertiary' services should be via a consultant-led service like the CMHT.
This stops GPs without the appropriate skills from making inappropriate referrals to out of area services for which there are only limited contractual and budgetary provisions.
In the NHS, the provision of care services operates like a market.
On the one hand there are organisations, locally based, which "commission" (i.e. specify, contract and purchase) the services they need on behalf of the community. The organisations that have done that throughout the last decade are called Primary Care Trusts (PCTs). There are 151 PCTs in England (Scotland, Wales and Northern Ireland have different arrangements) and the PCTs are one of the biggest elements of the NHS to change on April 1st.
The other side of the NHS is made up of "providers". These are the organisations which operate general, specialist and training hospitals and mental health services. Gender Identity Clinics are (and will continue to be) part of the Mental Health Trusts dotted around the country.
The 'Charing Cross' gender identity clinic which many people know about is part of the West London Mental Health Trust. It actually has nothing to do with the 'Charing Cross Hospital' virtually next door (and which coincidentally carries out some transgender related surgeries). The colloquial name 'Charing Cross' is simply a historical throwback. The 'Charing Cross Hospital' is actually run by another body called the Imperial College Healthcare NHS Trust. You can see how people get confused!
Usually PCTs would commission local provider services to provide the full range of care requirements for their population. It has always been a principle of the NHS that it cares for all health needs for which there is evidence of an effective treatment.
PCTs, with limited funds every year, set priorities for how many of each kind of service they would budget for. This budgeting process is reflected in the contracts they then make with provider organisations.
If too few places for a service are contracted then either referrals need to stop for the remainder of that financial year (something which has happened in many areas in 2011-12) or they would need to come up with extra money … which can only be done by reducing the spend elsewhere.
This is how waiting lists are often created … and how two adjacent areas can have different waiting times for the same service in the same hospital.
(Note this is a bit of a simplification, as there are different ways of contracting services; the simplification is good enough for this quick explanation though).
Contracting also has an effect on the capacity of services to accept new patients. A gender identity clinic will employ a certain number of staff and choose particular premises based on the number of places which it is contracted to provide. If commissioners get their numbers wrong, or are forced to change their policies by local action, then clinics can't instantly admit more patients just like that. This is the second reason for queues forming.
Gender clinics fall into a category of NHS care called Specialised Services. Basically, these are services for things that are either relatively rare, involve specialist expertise, or might be costly. The list was defined nationally.
For most health needs there are services in each locality. For specialised services it is not uncommon for there to be only a small number of services covering a large area or the whole nation.
Rather than have all 151 PCTs entering separate contract arrangements with each of these specialist services (e.g. for heart transplants or particular kinds of cancer care), the commissioning has been done jointly by so-called Specialist Commissioning Groups (SCGs).
There are ten English administrative regions. Many things are organised at that level. For instance, Strategic Health Authorities have been regionally based, managing the whole NHS in that area. Similarly, therefore, SCGs also brought together all of the PCTs in one region to commission specialised services. I.e. There were ten SCGs.
This is why, until now, the policies for the availability and scope of gender clinic services have tended to be made regionally. (I say 'tended' because there were PCTs who were so determined to restrict or obstruct such referrals that sometimes they opted out of regional consensus).
This regional setting of policies explained the different kinds of treatments which gender clinic patients would be allowed to have. SCGs weren't inclined to collaborate to establish consistent policies or service specifications. The capacity which was contracted for would also lead to different waiting times in different parts of the country.
All these factors combine to explain why gender clinic services were very much a 'post code lottery'.
The new system
All of that detail was necessary in order to dispense with the jargon and make it easier to explain what now changes.
It is easiest to begin with what doesn't change.
The reorganisation taking place on 1st April doesn't directly affect NHS provider organisations (for now) … although they will be indirectly affected further down the track.
Gender Identity Clinics, as they are part of NHS provider organisations, will not be subject to reorganisation.
Existing patients (whose care packages have already been invoiced by the provider trusts) will continue with their treatment … although, where surgical referrals have not already been authorised by the old commissioning bodies, funding for those subsequent needs will fall under the new system.
Gender Identity Services are also still regarded as Specialised Services. The list of specialised services is defined in regulations attached to the Health Act. Therefore, this list isn't going to change too often.
The most visible changes to the NHS will be the full scale reorganisation of the commissioning and strategic management side of the health system.
On March 31st all 151 PCTs (plus the ten English region Strategic Health Authorities) will all cease to exist. Their place will be taken by a complex system of new organisations, with a whole new set of relationships between them.
The 151 Primary Care Trusts will be replaced by 211 Clinical Commissioning Groups (CCGs). These will be responsible for all the non-specialised commissioning in their own area and their leadership will include local clinicians. In some ways they will look a lot like PCTs; however there are a range of other things which PCTs were responsible for, which will transfer to other organisations.
Overseeing the CCGs there will be an NHS Commissioning Board (NHS CB). Although a national body, the NHS CB will carry out many of its functions through 27 so-called Local Area Teams (LATs). The LATs will supervise CCGs to see that they are operating properly. They will also commission local GP Practices, Dentists, Pharmacy services and some specialised optical services.
The important thing for this discussion is that the NHS CB will also be responsible for commissioning specialised services.
National level consistency
The NHS CB's responsibility for specialised services will bring about the biggest set of changes for people seeking gender treatment.
In place of a multitude of commissioners with different policies, service specifications and contracting arrangements, there will be one standard policy and two set of service specifications for the whole of England. One set for adult services. One set for child and adolescent services.
This will mean that all treatment referrals will be subject to the same policy decisions regardless of where you live in England.
The part of the NHS budget which was being spent previously on these specialised services will be pooled centrally. CCGs won't have control of this part; it will be administered by the NHS CB. New standard contracts will be signed with specialised service providers according to one set of conditions.
What this means is that where £x was being spent on gender clinic referrals each year by the ten SCGs, initially the same £x will be allocated for all needs nationally.
There were many inconsistencies in the ways these (and other) services were commissioned before. Different providers charged different amounts (reflecting the different services they provided) … but also in some cases one clinic might be charging different contract prices to different commissioners. Some commissioners were actually paying through the nose because they hadn't negotiated as well as their neighbours.
Sorting out these inconsistencies will take a while. Therefore the NHS CB has promised providers that, in order to avoid financially destabilising them by sudden changes in their earnings, the services will all receive roughly what they received before, where all other factors are equal (i.e. the same number of referrals and a similar specification of services).
In subsequent years the NHS CB will then 'normalise' what the providers receive, based on a single pricing model (in NHS jargon a "tariff") and the common national service specification. In the process they will probably also insist on changes to cherished ways of working, if these are seen to be inefficient.
Those who are interested in reforming care protocols would do well to learn how to express desired improvements in cost and evidence terms. As the NHS CB will have much more purchasing clout than regional and local commissioners used to have (and as there is no other customer for what they do) the service providers will probably find themselves having hard conversations about aspects of care which can't be justified on evidence grounds.
This is where the picture looks like it may be less good for future gender clinic patients.
In the present system the range of treatments being funded varied between regions (and sometimes between PCTs). The amount of capacity being contracted also varied. As explained before, that accounted (in part) for waiting lists varying around the country.
The new central system will mean that there is one standard set of service specifications; one standard list of which treatments may be funded; and agreed contract capacity with each clinic.
However, there will be no additional money.
This means that people living in areas that restricted referrals altogether, or funded very little, should see dramatic improvements.
It also means that people living in areas where more sophisticated and generous policies had been developed may see the clock going backwards.
As demand wasn't being budgeted for in some areas at all, the pooling of budgets is also likely to mean that the shortfall will have to be spread nationally.
This means that in some areas waiting times will come down (provided GICs have the capacity) whereas in other areas the waiting times may inevitably rise again. This is especially likely to happen as providers are only being promised consistency of income for one year. This means they will not be able to expand to offer more capacity unless the NHS CB permits them to.
The policies and service specifications which the NHS CB will use have been developed over the last year by parts of the existing specialised commissioning team, consulting with both clinicians and expert stakeholders.
The establishment of a Clinical Reference Group to help shape the service specifications has meant that, for the first time, clinicians had a say in the specification of what they would be asked to provide. On the whole this looks to have been a positive development.
The involvement of expert stakeholders in the process of developing the specifications has also had positive benefits. The process began with the best of the existing policy documents, although I am sure that people directly involved would say they could still be improved.
The establishment of that kind of consultation and involvement provides a route for evolving best practice from both sides.
Following the initial design of the service specifications, they were also put out to wider public consultation. That consultation is now closed; however you can access the draft specifications online. There are two documents: the specification of clinical services and the specification of surgical services.
How commissioning will work
For patient advocates to be able to work with the new commissioning system it is important to know a bit more about how it works.
Specialised commissioning falls into two parts. There is the formulation of policy and the accompanying service specifications.
Policy includes defining which parts of a patient's care falls within the definition of the specialised service and which parts are still the responsibility of local commissioners (CCGs). The NHS CB is quite clear from the outset about that dividing line, and about the responsibilities of local commissioners and doctors.
The split of responsibilities is defined in a document known as "The Manual for Prescribed Specialised Services".
For trans patients this is vitally important, as Primary Care has a big responsibility within the overall treatment process.
The pages you'll be interested in are pp126-128.
For Child and Adolescent services, CCGs have no part in commissioning at all. The service is designed around the one single nationally designated provider (The Tavistock and Portman NHS Foundation Trust) and the volume is anticipated to be around 130 patients each year. This means there should be no reason for GPs to get in the way of referrals. However, it also means that CCGs have no mandate to provide local alternative services (except to the extent of local Child and Adolescent Mental Health Services working in collaboration with the Tavistock and Portman as lead).
For adult services the Manual explains that two kinds of provider service are involved (GICs and surgery centres). For those who may have heard and been worried by rumours that there will only be three GICs the Manual makes clear that this is not the case. The Manual refers to seven designated GICs, plus four centres providing genital surgery and seven centres providing chest surgeries.
The Manual makes clear that CCGs are responsible for the initiation and ongoing prescribing of hormone therapy and for organising blood and other diagnostic tests as recommended by the Specialist Gender Identity Disorder Clinic Centres.
This part should help eliminate the problem which some patients have experienced, where PCTs had been "red-lining" hormone prescription (i.e. telling GPs they mustn't provide such prescriptions). As GP Practices are commissioned by the NHS CB, there is also a very clear line of authority for the commissioning team to address issues of bad practice among some GPs.
The actual leadership of commissioning will be centred in one of the NHS CB's Local Area Teams.
As explained before, the NHS CB will have 27 such LATs. Of these, ten (spread around the country) will have specialist commissioning responsibilities. One of these will therefore lead on the continuing development of the gender identity services. Patient advocates will therefore have one point of contact for this.
The ten LATs will divide up the actual contracting side of commissioning, in a way that is roughly analogous to the old Specialised Commissioning Teams.
Actual GIC and surgery services will be contracted by the LAT in which the service is located, using the national standard NHS contracts. The difference is that each LAT will deal with referrals for patients anywhere in the country. This means that if a patient moves whilst being treated, existing problems will not occur with continued funding. (Patients can, of course, opt to transfer to a closer GIC. Again, however, they are dealing with a single commissioning body.).
On the whole this is mostly good news.
The downsides identified so far are that some people will feel the effects of service options being levelled down. In Sheffield, for instance, the clinic had agreed (uniquely) with the commissioners in Yorkshire and Humber to fund facial electrolysis for Male to Female patients.
That treatment is not included within the new national service specification; therefore providers will not be reimbursed by the NHS CB (except where treatments have already begun).
The new specifications are also not yet aligned with the forthcoming national guidelines for care, which have been developed by an inter-collegiate committee for the Royal Colleges. This alignment will need to happen in due course; however it is unlikely there would be new money; therefore any extension of the service specification could only come through adjusting the numbers of referrals accepted each year, or by making services more efficient. The NHS CB will almost certainly push down the costs per referral and expect the clinics to find the savings they need to remain solvent.
The other issue mentioned in connection with the specifications is that they so far only describe one level of service for all. Gender patients are clearly very diverse. Therefore one way in which to permit fixed funding to go further (or even make savings) would be to develop a more flexible service specification to provide levels of care agreed between clinician and patient.
The big unknown is how care will be affected at the local level.
All the work in specification has concerned the details of specialist services (clinical and surgical) which fall within the specialised services definition.
As the "Manual" makes very clear, the NHS CB draws a sharp dividing line between what is specified to be funded centrally and what are regarded as "non-specified" services … the parts they don't fund.
The rule about prescribing and carrying out tests has been spelled out. However, there are large aspects of the local care pathway which remain unspecified, because they are outside of the specialised commissioning project.
What isn't clear from the documentation is whether patients will still need to be referred initially to Community Mental Health Services for initial assessment and referral. Financially, of course, it is in the interests of local commissioners to get shot of gender patients wherever they can. Trans people would probably mostly like to be referred straight to a GIC. If this change were suddenly to take place, however, it may have some undesirable effects on waiting lists and lead to people receiving less immediate care for depression that could be dealt with locally.
The possibility of other postcode effects could also exist where PCTs had formerly (in the good cases) provided services to support patients locally. On this, only time will tell.
What I have tried to do here is explain the most likely effects of what is going to be a complex change for the NHS itself.
Inevitably change creates worry for patients. I hope that, by explaining what we DO know, some of those worries will be reduced.
There are many unknowns still. In particular, we don't know how far the funding will stretch when spread nationally … and hence whether people will be able to access services quicker than in the past.
Some people may find that less things are covered than before. However, the benefits of having one set of commissioners to deal with, and involving both clinicians and expert patient stakeholders in policymaking, ought to have some benefits. Removing a big piece of discretion from local organisations should also eliminate a big problem for some.
As a strategist, readers will know that I am usually critical of the effects which this reorganisation of the NHS will have.
As someone expert in the commissioning of this kind of care, and in arguing for the improvement in care standards, I think that the benefits for trans people actually outweigh those disadvantages … only because the old system had enabled so many bad practices to exist.
Big changes are always unpredictable though. It is the things we can't foresee which have the habit of coming up and biting.
All I can say, therefore, is time will tell.