Welcome to the forums,
@elliepeabody, and congratulations on what you've achieved in Suffolk and Norfolk. As you can see, it's very inspiring for the rest of us!
The structural issues sound like such a mess. It sounds as though this is key:
Do you have any recommendations for how other patients could set about doing this in their own areas? Can patients do this on their own (or as a group), or do they really need some sort of NHS-based champion to lead, advise, and/or be a point of contact?
Thank you for the kind comments Sasha and Maria.
It is very hard to advise a way forward for other groups as things are likely to be so different in different areas. This post is a bit of a 'stream of consciousness' with points in not in any particular order.
If you can find someone within the NHS to advise that would be great, but it is very difficult to get people interested in ME. I have found that those most likely to show an interest are those with family or friends affected by ME.
Start out by deciding in detail what you want to achieve, what is most important, what will be easiest to implement, and what the cost implications are likely to be. Commissioners are most likely to go for 'quick wins' first.
It will be likely that there will be considerable vested interest in maintaining the status quo. Change will cost the NHS in terms of time, money and change of approach by clinical staff.
It is becoming increasingly clear that financial issues are more important than ever. At the moment 'cost neutral' seems to be the buzz word. So if you can propose changes that are cost neutral you may have more luck getting them implemented. Actually this shouldn't be as hard as it initially sounds. CBT / GET is very expensive to deliver, as opposed to say advice regarding pacing, medication for symptom control and ongoing reviews. The important thing is to get the approach right and you can then build on that.
What you are doing will be a process rather than a discrete event.
This is very important - You will also need to decide on an approach with regards to NICE and how clinical leadership and governance will be addressed if you are proposing a departure from NICE. (Charles' posts above put this in a bit more context) Again, it is vital to get your ducks in a row regarding this before you approach Commissioners / CCG's.
We were very lucky in that we had Dr Mitchell's legacy to build on and a precedent had already been set. Still, for other areas I would say that it is very important to get your ducks in a row with regard to what patients want in your area. Local support groups are likely to have a data base of pwme locally and you may find it helpful to work with them to produce a survey so you can get a reasonable number of responses (at least in the 100's). Plus social media is now much more mature than it was when we undertook our survey in 2009 so it is easier to get the word out and obtain more responses. I suspect many local NHS ME and CFS Services have never actually asked pwme what kind of service they want.
You will need to be aware of the area covered by your local service, which CCG's commission the service, and how the commissioning is structured. Building personal links with Commissioners, and probably also doctors in your local CCG's is key to making progress. We have found it very important to be circumspect about what we say publicly about what is going on, however unhappy we might be about particular aspects of what is happening. It is just as important to manage expectations, and don't count your chickens to the wider community until something is a done deal.
You will probably find that your local CCG's have public meetings and there will be an opportunity to ask questions and network afterwards. One of the aims of CCG's is that they are supposed to be more responsive to local need. So have a look at your CCG websites, see what they say and tailor your approach to the CCG's stated aims.
Ask to see a copy of the past couple of years patient surveys that the Provider should have undertaken as part of demonstrating they are meeting the key performance indicators in their contract. This will give you a feel for how the Provider operates and what Commissioning is asking of them. I would like to know what the KPI's the Provider is being asked to meet. You will probably find they are quantitative (weeks from referral to appointment) rather than qualitative (functional outcomes).
If you can get your local Healthwatch to support you that will help although we have found they are inadequately resourced.
Find out where the local service has been placed - Mental health, community services, long term conditions etc. These streams will have different priorities and different ways of doing things. It is likely that they will also have someone within the CCG who is responsible for that particular work-stream, and that may be someone to approach.
Bear in mind that you will be attempting to implement significant cultural change and that involving patients / carers in service development is cultural change in itself. This document about cultural change in social care produced by the University of Leeds is well worth a read.
http://www.scie.org.uk/publications/knowledgereviews/kr17.asp
You can register for a free account to access the pdf.
You will need to have a group of committed Patients / Carers who have strengths in different areas, trust each other, work well together, who are in it for the long haul, and who are prepared to accept that they will be criticised for working within what is a dysfunctional system. Some people may pop up, cause havoc, then drop out of the process.
Be prepared to be met with intransigence. When you get to the point of having some sort of Patient / Carer group meeting with the NHS to discuss service development make sure you agree on terms of reference before you start, and that meetings are properly minuted, and that minutes are agreed.
IME getting any change within the NHS is an incredibly slow process and is likely to take years. It is a marathon not a sprint.
As I said in my previous post, the way the NHS is set up is very complex indeed, and it is a constant challenge to understand what is pertinent and what is not. You will be working on shifting sands.
Have a look at the websites for your local Health Overview and Scrutiny Committees and find out how they operate. Find out what you will need to do to get attempts to improve your service on the Forward Plan for the Committee to review - it's likely you will have to go through a complaints process with the Provider first.
Finally meeting with Commissioners and / or CCG's and waving the ICC in front of them is unlikely to cut any ice.
The above are all general points which will not all necessarily apply. HTH
