Wednesday, June 19, 2013

'Positive Vibes' at NHS England

Coin Street Neighbourhood Centre

Trans delegates at a consultation forum on NHS Gender Identity Services (GIS) were smiling and talking of 'Positive Vibes' at the end of a long day of participative discussions and presentations on service commissioning reform in London yesterday.

The meeting, facilitated by NHS England's Patients and Partnerships team, in conjunction with the Equality team and Specialist Commissioning leaders, involved over fifty stakeholders.

The event was designed to explain both the interim arrangements for commissioning GIS in England, and the process that will follow to develop an all new service specification and protocols for implementation in April 2014.

Listening

A significant part of the time was also spent gathering views … although, unusually for such occasions in the past, the leaders present gave the strong impression that they had already absorbed and understood many of the areas of contention.

The conduct of the event, which took place at the Coin Street Neighbourhood Centre near London's South Bank, appears to confirm the promises of a new kind of approach to stakeholder involvement under the new regime.

As one delegate observed to me, "the atmosphere could not have been more different compared with the event organised last year by the Department of Health under the Government Equality Office's Transgender Action Plan".

One civil servant had described their experience at that meeting last year as "bruising". And you could understand why delegates to yesterday's event may have been anticipated the proceedings with cynicism.

There were no raised or angry voices on this occasion though, as stakeholders and NHS England staff alike threw themselves into the work with gusto.

Helen Belcher

Leaders

The event was attended for five hours by Professor Steve Field, NHS England's Deputy Chief Medical Officer, who also has a cross-cutting responsibility overseeing work on Health Inequalities and Equality.

Field is a GP (he still practices one day a week in Birmingham). He was the previous chair of the Royal College of General Practitioners (RCGP) and wrote the organisation's curriculum for the training of GPs. He is also a keen advocate of the NHS Constitution and quoted the opening passage when speaking in the afternoon:

The NHS belongs to the people. It is there to improve our health and wellbeing, supporting us to keep mentally and physically well, to get better when we are ill and, when we cannot fully recover, to stay as well as we can to the end of our lives. It works at the limits of science – bringing the highest levels of human knowledge and skill to save lives and improve health. It touches our lives at times of basic human need, when care and compassion are what matter most.

Field was joined by NHS England's Head of Specialised Commissioning, Kate Caston; the Portfolio Director for Mental Health, Patrick Neville; and gender clinician Dr John Dean, recently appointed to chair the Clinical Reference Group (CRG) for Gender Identity Services.

Also present was Professor Dinesh Bhugra, who is President of the World Psychiatric Association (WPA) and a former President of the Royal College of Psychiatrists. He is Professor of Mental Health and Cultural Diversity at the Institute of Psychiatry in London. His attendance confirmed the level of engagement now in the processes of reform.

Helen Belcher

Specialised commissioning

NHS England is responsible for direct national commissioning of over 150 so-called 'Specialist Services'. These are clinical specialities where the relatively small size of the patient population, the cost profile, or the specialised concentration of clinical expertise means that it would not be sensible for local Clinical Commissioning Groups (which replaced Primary Care Trusts) to each contract services.

The purpose of CRG's is to review and improve the delivery of these specialist services, which includes refining the specifications for purchasing such services from provider clinics. NHS England currently has 74 such CRG's, which were initially set up in 'shadow' form in 2012, so that NHS England would have policies in place to take over commissioning these services in April 2013.

One of those 'shadow' CRG teams had engaged with trans stakeholders over the last year to develop an initial national policy for Gender Identity Services. They based their work on the policy used in the East Midlands, thought to be among the best. The product of their work was the draft English Service Specification (ESS) which had been put to full public consultation in January 2013.

Interim specification

It was explained that the reason why that 'ESS' had not been adopted from 1st April was because of the strength of stakeholder feedback received.

Reports say that, of all the 150+ policies consulted upon in January 2013, more than 80% of the feedback had concerned the GIS documents, and had come from trans stakeholders.

Thus, one important purpose of the meeting was to explain the policy which it was proposed to adopt for the interim, based on the service specification recently developed by NHS Scotland, with a few specific changes. It was proposed to introduce this interim policy from 1st July 2013.

It was this and other proposed changes which had already provoked howls of concern from clinicians in some of the English Gender Identity Clinics, which I reported a couple of weeks ago.

The NHS England team will be meeting the clinicians on 21st June to discuss the same proposals. As Steve Field commented, "The process may be rocky at times and clinicians may find the change difficult".

Helen Belcher

World Class

Steve Field explained that, having bought time by implementing an interim service specification and protocols from 1st July, the main work of the Clinical Reference Group would be to embark upon a detailed review, aiming to present a new set of proposals to stakeholders by January 2014 and implement those new policies from April the same year.

He explained that he had heard some of the concerns voiced during this event around existing services, acknowledging worries about the safety of the location of one clinic, and the present differences in accessibility to services in different parts of the country. He was also familiar with all the feedback from the January consultation.

His ambition, he said, was to achieve uniformly high standards across England, although he acknowledged that it couldn't be guaranteed that everything that people wanted could necessarily be funded by the NHS. "We will consult to learn", he promised.

Field made clear his view that all GIS clients had the right to be treated with dignity, care and compassion … adding, "We need to find a way of detecting early where that's not happening".

He expected lots of patient input to the CRG's design work. "We want to design a service that's the best in the world".

The Scottish connection

John Dean presented a potted version of the proposed interim specification, highlighting the four areas of difference between this and the Scottish Service Specification (SSS) on which it is based.

The details will be covered in a subsequent blog once the meeting with clinicians has concluded on 21st June. They concern details such as how referral takes place; the expected pathways within a service; which kinds of treatments are available to be funded; and the order in which some things can occur.

NHS England have also promised to release all of the presentations and captured workshop comments from the event.

One headline to be going on with is that the new interim policy will permit referral direct from any General Practitioner or other clinical service into any of the GIC services that are commissioned in England.

Although GP referral already happens in some parts of England, it is far from the norm. Accommodating it may be one of the biggest practical changes which existing clinics need to adjust to. However there are clear benefits for patients, who will no longer need to be referred through their Community Mental Health Team in the first instance, and will also have a much wider choice of clinics to attend.

It is concerns about changes like this that have some of the clinicians in uproar, as reported before. And it is hard to tell at present how much of the clinical antipathy stems from hearsay and speculation, and how much that may be dissipated in the course of Friday's event by talking through and understanding the proposals.

Whatever the mood of the clinicians, however, the NHS England team were leaving no doubts of their own determination about reform. The seniority and experience of some of the figures involved means that objections would need to be very well founded. At the end of the day it is NHS England who will be purchasing and contracting services and there were hints of an attitude that if some providers didn't want to offer services in the form the commissioners wanted then then they could be decommissioned.

Helen Belcher

Open to innovation

John Dean also expressed a willingness to look at ways of innovating to develop better services. He said he was in favour of looking at ways of delivering more elements of the services locally and there will be active discussions about how NHS England might be able to cover facial hair removal for some patients (only available in some areas till now).

The interim proposals had already prompted new questions. One delegate asked whether patients could be referred from private clinicians into NHS services. Another queried whether patients could be referred back at later stages following an initial treatment episode … for instance, where someone might have been deferred a decision about gender reassignment surgeries after transitioning socially but then decided, years later, to pursue that. Others wanted to know whether, if facial hair removal were to be funded now, past patients (who could not afford to purchase such treatment themselves) could return seeking such help.

Questions like these underline how change often raises new questions at the same time as trying to resolve old ones.

 

Update 21st June 2013

The meeting of clinical leaders of the English Gender Identity Services and NHS England's specialist commissioners took place on Friday 21st June 2013, as planned. Multiple sources have confirmed that the meeting was constructive and successful. In discussions, which included the opportunity to learn about the Scottish approach in more detail, the clinicians are understood to have found the necessary changes less of a concern than previously feared, and were able to agree to operate with them as required. This means that the interim protocols will commence from 1st July 2013 as expected. It is understood that the discussion may have also highlighted concerns which the clinic leaders themselves have had concerning the capability, knowledge and professional behaviours of some general practitioners. The capabilities of GPs are an even more important issue in a system where they are responsible for direct referral. It is therefore vital to bear in mind that this is only the very first step in a change process, where both clinicians and patients have a stake in seeing things change for the better. There will be much work for NHS England the specialist commissioners to do in order to address the whole environment in which this kind of care pathway operates. NHS England have committed to providing written up details of both meetings so far.

15 comments:

bolshykitty said...

It's obvious that Doctor Dean is prioritising management and finances before outcomes. Frown what you've written I'm cynical. The exercise sounds a step forward from the political rearranging of the deckchairs of the Transgender Action Plan to a clinical rearranging of the deckchairs.

While I was at the Laurel's, run by Doctor Dean, I felt there was little management oversight. I had little confidence in the ability or personal skills of the psychiatrists. They also overreached their medical brief contravening published DoH guidelines and intruded on patients human rights. The therapists could be bullying in sessions and during group sessions. I was also worried about unhealthy peer pressure and subtle bullying. This last issue concerned a few other patients so much they refused to attend or felt forced to create their own support groups.

I have no confidence gender specialists are standing up for treatment that provides the best outcomes for patients. I'm not even sure they are up to date with the very latest research, most of which is coming from America, and have little faith they are giving appropriate consideration to equality law.

It's a loger discussion but given historical NHS attitudes to transgender patients I believe the Sex Discrimination Act may apply to older transgender patients. Often they are the ones who were scared away by abusive gatekeeping and transphobia and need the most help. In the light of reparations paid to victims in former colonies I would like to think that appropriate funding should be made available to older patients who need more help.

Lastly, the conservative mindset of older doctors who don't want to rock the boat is a race towards the mean. Whether it's direct patient contact or advocating progress they remain stubborn. Consensus only serves to push necessary change another generation down the road until it's too late. If we don't force the pace of change harder and faster who will?

Malin said...

Bolshykitty I'm sorry that you've had a terrible experience of the laurels. My experience hasn't been perfect but that's by and large been down to admin rather than the clinical staff.

My experience of Dr Dean is that he gets it and is willing to help me get the treatment that I need. And he had to fight Devon PCT whilst it existed because they were saying that they would fund no surgery without 2 years RLE, so they've been forcing me to continue to live as a man whilst having DD breasts. Dr Dean seemed really pissed off by the PCT not doing what was the best for patients and ignoring all the evidence out there.

I've been attending the Laurels for over two years and I have never had to attend one of their support groups. I know that there is one therapist who can be described as bullying, but I've never had much to do with her.

My discussions with my therapist and with Dr Dean suggest that they at least are very concerned with trying to give patients the help they need with minimum hoops to jump through. I know this isn't true across the board though. A friend of mine is also with the Laurels and had to go for a second opinion before he was referred for chest surgery. I haven't been referred for a second opinion and this is fitting with current standards of care.

Anonymous said...

As someone who attended and was abused verbally and emotionally by charing cross GIC staff some twenty years ago I have seen the good and the bad. I have met Dr Lorimer - I trust and respect him but feel CX GIC use him as a PR face to hide behind. I have been back recently (hopefully less than fifteen months before my first appointment) and the place looks much nicer, but still has problems that are so easy to correct and cost nothing. Note that I do this sort of consultancy for a living so this is a professional rather then personal opinion of their failings.
I do hope things have change but am expecting to have to fight for what I want. I just wish I could afford to go private...

HenryHall said...

>> [Steve] Field made clear his view that all GIS clients had the right to be treated with dignity, care and compassion … adding, "We need to find a way of detecting early where that's not happening".

It is hard to believe that is anything other than an anodyne platitude. Choose any one patient at random and you will find it. The flouting, within medicine, of the human rights of transsexual people is pervasive and universally denied.

You cannot, as he hopes, ask someone with care, compassion and dignity to give up their human rights to privacy and self-determination. See no trees while standing in the middle of a forest.

The greatest impediment to solving a problem is a refusal to admit that it exists. When was the most recent formal review of ethics and lawful practice?

Suzanna Hopwood said...

While there is clearly a large element of truth in HH's observations about the treatment of many ( not all) trans* people in the system, as transdocfail made abundantly clear, it is a big step to dismiss Steve Field's comment as an "anodyne platitude" and evidence of a refusal to admit that a problem exists.

I was at the event and heard what he and other NHS England people were saying about this both in plenary and in bilateral conversations and despite being inclined to scepticism and with an ear for cant I think they mean it.

However as with all things it is outcomes and actions which count don't they ? So let's see what happens and moreover address ensure that the equality and human rights issues are properly addressed

HenryHall said...

Christine wrote: >> NHS England have committed to providing written up details of both meetings so far.

Well, since 1 July 2013 is upon us, all bar the weekend, would anyone care to place a modest wager as to whether NHS intends to deliver on the commitment that Christine wrote about above?

Or at least delay things until the issues are no longer important to patients.

Is something still changing about the meetings that took place last week? Or only about horse-trading since then?

Christine Burns said...

Olivia Butterworth, Head of Public Voice for NHS England, wrote on Friday 28th June:

Dear All

Firstly we would like to thank you all for your attendance at the meeting on 18th June at Coin Street Neighbourhood Centre. Your input on the day was invaluable and has greatly helped us in moving towards an interim position for the provision of gender identity services.

We will write to you properly next week with copies of all the documentation promised but, in the meantime, wanted to make you aware of a small delay to the implementation of the interim specification.

You may remember at the meeting that we intended to implement the interim model from 1st July. To ensure we have really heard and responded to all the feedback received it is no longer practical to rush this through and meet a 1st July deadline. We will write to you next week with all the feedback and will confirm the revised timetable for this interim period.

Best wishes,

Olivia


Olivia Butterworth
Head of Public Voice
Patients and Information Directorate

HenryHall said...

So, it's over a week since 28th June. Still don't have a confirmed revised timetable then? People keep on writing stuff that they don't mean.

Christine Burns said...

Henry, the following was sent to the stakeholders involved in the consultation on 3rd July. The fact you've not heard about it is probably testament to people respecting an embargo on the key document involved. People will discuss that document after 12th July, as requested. And the reason I've not responded to you sooner is that the server embargoed your comment as possible spam.

I appreciate that you may have strong personal reasons for distrusting people but so far the Patient Voice team have done everything they have said they would do,or explained why there have been delays. It might be worth granting them a little benefit of the doubt.

Email of 3rd July to stakeholders

Dear all,

Further to our e-mail to you last week please find attached to this e-mail the following documents:

* A letter from Professor Steve Field and Dr John Dean thanking you for your involvement in the workshop and explaining the current position
* An analysis of the feedback forms which were completed on the 18th June
* The presentation from Kelly Muir on the Scottish model shared on the day
* The revised draft interim 2013/2014 NHS England Gender Dysphoria protocol and guideline that will be put forward to a meeting of NHS England on 12th July for approval, based on the endorsements of both this group and the clinicians meeting
* A report of the workshop held on 18th June 2013 and its outcomes
* Notes from clinicians meeting held on 21st June 2013

It is important to note that the interim 2013/2014 NHS England Gender Dysphoria protocol and guideline is the interim draft position and this will be going to the Clinical Priorities Advisory Group for consideration before final approval. We would appreciate it if this wasn’t shared outside the workshop group until it has been formally presented to the NHS England meeting on the 12th July.

The work of the Gender Clinical Reference Group will be to work up the full NHS England policy/specification and the long term commitment to improve the quality and provision of equitable services.

We will be in contact again to update you about the wider work for the review Professor Field will be undertaking over the coming months.

Thank you again for your continued support with this important area of NHS services.

Kind regards

Olivia

Olivia Butterworth
Head of Public Voice, Patients and Information
NHS England

HenryHall said...

Thank you Christine, there are lots of good and valuable documents listed there.

But none of them include a confirmed revised timetable. Correct?

Christine Burns said...

I wouldn't expect a timetable until the Clinical Priorities Advisory Group has given final approval. However, it wouldn't be up for that approval unless it was intended to put it into force.

HenryHall said...

We're agreed then. No expectation.

Christine Burns said...

Olivia Butterworth wrote today:

Hello

Thank you for contributing to the development of the NHS England Interim Gender Protocol which was approved at the Clinical Priorities Advisory Group (CPAG) on the 12th July (see attached).

As we've all agreed this is very much the first step forward and allows consistent access, although we know there is much more work to do. We have considered comments received from the last draft prior to it going to the CPAG and some amendments were made where possible.

Implementation of the interim protocol

As people are already on different care pathways we have considered this area carefully and you will find the details of how the protocol will be implemented in appendix 8.

For ease we have also listed this for you below:

Individuals already being seen by services are on an existing pathway.

The date for implementation of the protocol is 1 August 2013 for all new patients seen by services from that date.

The protocol will be shared with Area Teams, who will work with services with regard to the impact of the protocol and how soon the protocol can be applied for existing patients.

The aim is that the protocol will be applicable for all patients by 1 October 2013, in line with other specialised service specifications. Until the protocol was agreed the detailed work could not be taken to understand how much change will be required in individual services. This timing allows for this work to be undertaken.

By 12 September 2013 Area Teams will confirm to the Assistant Head of Specialised Services, Operational Delivery Directorate, the impact of the protocol for services as a result of implementation for all patients by 1 October 2013.

The on-going review of the interim protocol

The interim protocol will be kept under review and it was agreed at CPAG that NHS England would work with services to develop a set of frequently asked questions so that these can be shared with all service users in all the Gender Identity Clinics.

Future work

Workshops

As promised at the June event we will be holding a further workshop meeting for stakeholders in January. We will send the date for this meeting as soon as possible for your diaries.

NHS network

We have previously mentioned that we will be setting up a NHS network for this stakeholder group, this is ready however we are waiting for the review policy lead for the overall review led by Professor Steve Field to start in post before we release these details to you. These will follow soon.

Sharing your details

We would like to share your contact details with the Clinical Reference Group (John Dean and Steve Hamer) and the review policy lead for Professor Steve Fields review (within NHS England). Can you please let me know if you DO NOT want me to do this as we appreciate you details are held with us in confidence.

Your questions

Concerning the work of the Clinical Reference Group:

All comments received to date in respect of the interim protocol will now be forwarded to the Clinical Reference Group (CRG) for their consideration in the development of the Policy and Specification for 2014/2015. The first meeting of the CRG is on the 25th July and if you are not already registered as a stakeholder to the CRG you can do this by following this link for information - https://www.engage.england.nhs.uk/consultation/crg-stakeholder

The application form can be found at this link and is referred to as a survey: https://www.engage.england.nhs.uk/consultation/crg-stakeholder/consultation/intro/view

Professor Steve Fields review:

We will contact you to let you know what is happening regarding this review and the opportunities for your participation in this.

Other questions:

If you have any other questions they can for the time being be sent to this inbox and we will forward onto the relevant people for you.

Thank you again for working with us on this important area.

Kind regards



Olivia Butterworth
NHS England

Livi Butterworth said...

Christine - thanks so much for posting and keeping people informed.
I think we are also planning an October get together as there is much to discuss and January seems too far away. We will be in touch soon with confirmation.

I do want to reiterate that we see this as the start of an improvement journey - we can't change everything overnight but we can take small steps together.

Best wishes
Olivia

Anonymous said...

the protocol states only 8 electrolysis sessions are required (if you are lucky to get local funding), that may be right for laser as the whole face is treated in one session, but not for electrolysis which treats each hair individually, which means only small patches can be treated at a time making it a long drawn out treatment, the protocol also makes no allowance for post op health, also there is no contact available to make them aware of how wrong the document is.