UK: HealthSense, formerly called Healthwatch

Moderator note: This post and subsequent discussion have been moved from this thread:
Forward ME Group CBT/GET Survey - Tell NICE your experiences

I have just telephoned Healthwatch who may be interested to help generally...... More on this later;


Policy and Public Affairs
Jacob Lant - Head of Policy and Public Affairs

020 74 481795

Jacob.Lant@healthwatch.co.uk

 

A useful phone call and a result....



https://www.nationalvoices.org.uk/blogs/engaging-healthwatch

National Voices’ local influencing and campaigning network brings together professionals in member organisations who run campaigns that try to effect change at a local, as well as national level.

At our last network meeting in September, Jacob Lant, Head of Policy and Public Affairs at Healthwatch England joined members to talk about how charities can work with Healthwatch locally and nationally.

Whilst many network members have worked with Healthwatch in the past, none of us fully understood how they operated and how best to work with them to benefit those we support.

This blog attempts to make things a bit clearer for voluntary sector organisations looking to work with Healthwatch.

Healthwatch’s structure and operational model

Healthwatch is a national network of statutory organisations set up to give local people a say in how health and social care services should be run.

The network has a national body, Healthwatch England, and 152 independent local Healthwatch covering each local authority area in the country. Every Healthwatch sets their own priorities based upon local intelligence. However, the combined priorities are analysed on an annual basis and are used to set the workplan for Healthwatch England.

The network is supported by a team of regional managers split across four regions – North, London, South and Central. Local Healthwatch across these regions meet on a quarterly basis to share intelligence, discuss priorities and identify opportunities for joint working.

Healthwatch have a range of statutory duties and powers. These include the ability to visit any taxpayer funded health and care service to speak to people about their experiences of care and report this to providers, commissioners and national regulators. Each Healthwatch also has a seat on their local health and wellbeing boards.

Through the conversations they have with health service users, they amass huge amounts of data on people’s experiences. This is where their campaigning power lies: the data enables them to identify issues and evidence their campaigns. They publish analysis and top line data, and are happy to work with charities to delve into the detail on specific issues and conditions. You can email research@healthwatch.co.uk with requests.

 

Engaging with Healthwatch


Thu, 1 November 2018
Jess Brayne
Membership and Events Manager
@JessicaBrayne
Tips on how voluntary sector organisations can work with Healthwatch:

• Have a local campaign you’d like to work with them on? Approach the regional managers to see if they can help get the word out.
  
• Offering a service? Contact your local Healthwatch so they know to signpost to you.
  
• Delve into all that data they collect: Healthwatch hears from over 400,000 people a year which means there is always more data than they can publish. But they are happy work with charities to provide access to their evidence and help build a shared understanding of specific issues. You can email research@healthwatch.co.uk with requests.

 

Healthwatch produced a report on ME/CFS a few years ago.

There was even talk they would write one or more papers but I remember a patient who had pushed Healthwatch to do the report then being very angry that the research could end up in one or more published papers; I never really understood this objection as I thought published papers could be useful (I decided to not voice this opinion as the individual was very animated and I hadn’t read a lot of some very long messages on it).

 

I believe that part of the problem was the "hijacking" of the report and the "embargo" place on publishing by another organisation effectively claiming the work to be of their making.........and it to be under their control...... patients who have worked hard to initiate a project do not wish for their efforts to be used in this way.

 

if you read the full report, GET and CBT are commented on.

 

Yes, but because there was no research paper, they have little status and the findings have been largely ignored.

 

Agreed, but the survey is still "open", can be revisited, accredited and achieve some status.

 

Perhaps Forward ME and MEA can approach Healthwatch England to gain access to their capacity and funding to assist the survey in the longer term, as this should not be done and dusted by March surely?

https://healthwatchtrafford.co.uk/get-involved/surveys/mecfs-survey/

The aim of this survey is to gather and understand experiences of ME/CFS patients accessing health services.

By gathering this information, we will be able to identify where services are doing well and where they need to improve. We can then work with services and commissioners to make them better.


If you are effected by ME/CFS we would really appreciate hearing your experiences, it should only take a few minutes. Please also be aware that your answers are COMPLETELY ANONYMOUS - you cannot be identified by your responses and we will not ask for your name at any point so please be honest. We will publish a report about our findings but individuals answers will never be made public. Local Healthwatch are completely independent organisations and are not part of the NHS.


The survey is being carried out by Healthweatch Trafford, however if you are not a resident of Trafford please continue to fill out the survey and the results will be passed on to your local Healthwatch. If you would like to know more about your local Healthwatch, click here to find which covers your area.


You do not have to answer every question (although you do have to answer question 1) however the more information we can gather, the more accurate our report can be and the clearer the picture of how health services are serving the ME/CFS community we can build.

Please pass this on to anybody you think it might be relevant to.

 

Have heard back from Charles on this

Have replied,


Thanks for that feedback Charles,

There is the issue of the current NICE chair request, but also the fact that existing and recent patient experience feedback/surveys is/appears not to be formally feed into the NICE process?

It appears that vital existing info (and specifically on GET/CBT) which has already repeatedly been drawn to the attention of NICE in stakeholder submissions in January and in May (by Me!) has not been feed in yet or acknowledged.


That should be posted out to Peter Barry and Baroness Finlay.


That info should go in with and supplement the work you are doing in my view. It will make the process more objective, robust and credible.


I am merely suggesting that links with Healthwatch England are forged now before the GDC meet in earnest in Jan Feb and March.

This info will support and validate the lay reps personal experiences and their collective understanding from other groups and organisations ahead of this process.

 

A related example;
Only 14 pages so short.

https://healthwatchderbyshire.co.uk...017/10/V1-Fibromyalgia-Report-02032017-SM.pdf
Experiences of health and social care services for people with fibromyalgia.
Collected January & February2017

 

Interestingly, there is a report from Healthwatch Trafford here: https://healthwatchtrafford.co.uk/our-reports/ (scroll down)

ETA: I realise I didn't refresh the post before publishing (or was it the thread merge?), so I missed all these replies. Ignore me.

 

I don't know whether this is the correct thread but note it is Healthwatch and remember a particularly good article that I read in the Healthwatch magazine 2020-2021 winter edition, before I knew who Caroline Struthers was. I remember reading it and thinking of the timing that I hoped it would be re-advertised as the news cycle was so overwhelmed with other things (like lockdown, the vaccine being found to work, and the vaccine programme coming out etc).

EDIT: OH! and the ME/CFS guidelines being the main topic for pwme of course as the draft was released in Nov 2020 then the date of comment and release for the completion of process kept moving back throughout 2021

The HealthWatch Newsletter (healthsense-uk.org) page 8 titled: "It's not only drugs and devices that can do harm"


Or am I getting confused as this is Healthwatch UK (have they rebranded as the link goes through to healthsense-uk): Home (healthsense-uk.org)
and not Healthwatch England?

 

Looks good that they have noted a previous report led to something/changes. Just looked at the application form which includes the following:

"Voluntary and community groups (VCS) can apply for a costed piece of work to gather and capture experiences of NHS and social care services and/or inequalities or barriers to access.

We are looking for VCS groups which work with specific groups of local people that can use their community links to talk to people who do not have a strong voice.


Different methods will work to hear from different local people. So as part of your application you should set out the method you will use to gather and capture what people say.

Projects should focus on our target groups in the Coventry population - one or more of the following:

· Children/young people
· Men who experience a health or access inequality
· Ethnic minority communities that experience a health or access inequality.

Inequalities are unfair and avoidable differences in health across the population, and between different groups within society. Health inequalities or access inequalities can result from things like:

· Poverty/income
· Learning disability or physical disability
· Education
· Gender
· Ethnicity

 

If we were thinking about ME/CFS in general anyway then this seems very relevant.

I wonder how much it can bring together all these areas, because for pwme it is that 'across areas' bit that perhaps needs to be made visible (as well as clinics in general in UK offering not being of medical model - which one could argue is perhaps part of this)

Really important, in fact depending on how/who could be focused on in research it could be people who are somewhat invisible

Really important that this is being mentioned - methods used = who the actual sample is. It might be a worthwhile discussion (if this type of research might be something that could be repeated elswhere etc) regarding the 'how' because I guess part of the battle is that: how do you reach pwme, representative sample or those most ill or whatever?

 

Final point is me being interested in whether the wording/focus of this is worth noting, because there are grants available and because it is asking for patient-led (interesting in itself) about whether this might be helpful in indicating what might get grant funding here or elsewhere if someone's project?

And I'd be intrigued for anyone else to take a look at the application form on the topic of 'patient-led' to see, if this is the sort of thing there might be more of, how we could all think of it being made possible for pwme to do something like this re: design etc (in context of filling out the form I guess knowing it would be something that could actually be done) or if further help would be needed (and where that might come from?)

 

This post has been copied and some posts moved from:
Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

I’m not sure if this is the right thread to post this but David Colquhoun has commented on PACE etc again:

David Colquhoun: “Not many people think that the PACE trial was conclusive. But that is not, I think, sufficient reason to refer to "the abuse of people with ME by the medical establishment". The fact is that nobody has any idea what causes ME/CFS and nobody knows how to ameliorate it.”

“It is reprehensible that some people don't admit that this is the case. Excessive hype about cures that don't work leads to disappointed patients resorting to quacks, who have no compunction about making excessive claims.”

 

David seems to have missed the point that the abuse of people with ME/CFS by the medical establishment goes way beyond people not admitting they don't know how to ameliorate ME/CFS. There was of course direct verbal abuse of the patient community in lectures given by White, Sharpe, and others and spreading smears throughout the media.

And it wassn't the hype about cures sending people to quacks that was the problem. The quacks were already there. The problem was making people worse and misrepresenting evidence for personal gain.

It is a pity that Colquhoun seems happy to team up with the HealthWatch lot. As Caroline says they were the opposite of helpful relating to ME/CFS. Nick Ross was sympathetic but the medics on HealthWatch are a very motley crowd, including dyed in the wool BPS members.