Need Help

[johnsmith]

Patient and public involvement (PPI) in research (also known as service user/lay involvement) refers to an active partnership between patients and/or members of the public and researchers.

I have attended several PPI meetings. The project being worked on is:

“What makes a difference? Using Citizen Science to explore the value of various methods for recovery or improvement of mental health."

People need to have the tools to investigate themselves into what helps and what hinders? Need to learn those tools.

Once they know what helps people its’ implementing it, so giving people the skills to help themselves at different stages of the process they are at.

Has been discussed.

Many people in this forum know about mental health difficulties. Many of us have been at different places and have made different journeys.

I would like to be able to obtain critical thoughts on this to take to the next PPI meeting in May.

I do not know how this will develop. It may happen or it may not.

I have learnt a lot from the people on this forum. They have helped improve my approach and understandings in ways that are unexpected.

Look forward to comments critical and non critical.

[trimmso]

Hi John glad ur awake.

Sorry to appear ignorant but what is Citizen Science?

[johnsmith in reply to trimmso]

Members of the public do research in areas of their interest publish papers or pass this information onto researchers who publish their research and give them credit for the research done.

Citizen science is very active in astronomy. There have been many astronomical discoveries by members of the public.

en.wikipedia.org/wiki/Citiz...

gives a longer definition

When we investigate are issues we can become citizen scientists.

[Madlegs1 in reply to johnsmith]

I do archeological research using satellite imagery as part of a citizen research project.

All I can say about mental health is that no one should ever be afraid to ask someone "if they are ok", and be prepared to just listen.

[johnsmith in reply to trimmso]

See Madlegs1 answer

[katieoxo60]

Good morning John Happy Easter to you. I am involved with a patient and engagement group, which is supposed to cover patient experience good or bad, however I find there is more in put from those who run the services, and they only want to report the good results also these meetings called "we care" seem to be a platform for the topics of good for this year not the progress in general of the NHS . This is a three year project, there have been improvements since it started but I think we are failing to get over the fact that many everyday things are being overlooked in NHS services in preference for money being spent on research, projects like I am on , massive expensive parking services that do not work to spite people in put, just to name a few. The new data computorised records come into force soon , but even everyday data is not appearing on files of patients to be put into the new system and the inherent ever lasting incorrect data on many patients records. My perception of mental health care from a top informant is that things are happening that should not be, just sit on a ward and you will detect this due I presume to staff shortage. We are supposed to be moving forward in the NHS but at what expense to care.?? Thank you to those that feel the need in mental health is to listen, it is the same in physical health if a doctor does not listen then how can they diagnose without a symptom history or a past history that is relevent. W e are supposed to learn from mistakes so why does the NHS not listen to what patients say works or does not work . Nobody is a God we all make mistakes. I went on research for COPD , supposed to be anonamous but it was merely to get the doctors files upto date & establish a correct diagnosis which is still ignored now, as my recent experience shows. I beleive the group you are involved with as been around for some time in many hospitals and I am told can be quite interesting topic wise. Sadly many people out there in the community don't feel they are gaining anything from these projects, many do not know how to input there thoughts other than by moaning or complaining. These projects are often poorly attended in my experience , so are social care meetings, council meetings too by the public it effects and even those who do attend voluntarily often have no chance to speak as academics think they know best and can depict it better, grassroot representatives are often ignored especially if with an history of mental health issues. Sorry John but I am one of 1000s who have been through the system and does listen to what is really happening at ground level including others in the same boat. This is not stress it is the result of others perception of what different health issues mean, I would raise one word equality. This is not happening in many of the services we receive, major illnesses get priority, if stepping in at the ground some resulting major illnesses might be prevented causing less drain on funding . Housekeeping of the services to the public by the government should be addressed, waste of money, and community services. Research should be left to charities & universities. Training should be the main priority and rewards will follow. Enjoy your meeting

[johnsmith in reply to katieoxo60]

Thank you for your useful reply. I have met research by charities. Some of the charities research is extremely bad and unaccountable with fraudulent data. A lot of university research is grant chasing and research against two variables. This gives wrong answers when things happen in the real world. In the university world things are changing. There is much discussion about research that is multi-disciplinary.

Understand your frustration. I have it as well. There is movement. Chiropractic recommendations by NICE are the result of people like me persuading GPs who have chiropractor treatment to tell NICE how well it worked. Which I and others did.

I am at the end of life (65). I working to pass the wording and evidence of what needs to be done onto the next generation. So that the next generation start from a better position.

[katieoxo60 in reply to johnsmith]

Thats what the future is about our children and grandchildrens healthy future, but it does need some in put from us even if that is only the genetics we have given future generations. Like I have health genetics from my parents and it looks, like I have passed some onto my family . Research into genetics would be good, especially as many chest problems are passed on as is arthritis and some more serious illness. But Chiropatic treatment, laser and acupuncture have a part to play for some as does physio and mindful treatments. Best Wishes Katie oops I forgot I'm older than you but could still be around for another 25 years or so as people are living past 100 these days.

[johnsmith in reply to katieoxo60]

Thanks for the reply. I believe genetics plays a part. The brain and what it does is highly involved in arthritis. There is need to educate people so that they can work on movement skills that can ease arthritis problems. The genetics make us pre-deposed to things. It does not mean we will get these things if we find ways to compensate for our weaknesses.

Words on wisdom on this most welcome.

[katieoxo60 in reply to johnsmith]

Thats correct John genetics don't mean you will get the illness , just you need to be more careful how you lead your life in most cases, i.e my mum had a cough, non smoker lived till she was 97, even survived the war. However I have my fathers genetics it would seem for arthritis including gout. They now feel gout can be controlled by diet like many other illnesses which I beleive is true to some degree but how do I control my raised uric acid levels to stop the pain without pills I would like to be involved in some investigation into that especially as many have drug induced psuedo gout , maybe the cause of that might give results for the less fortunate who have ongoing gout. This is just one illness where medical investigation needs to be done for a better future in respect of arthritis, Oh and raised uric acid levels are just as bad as raised Cholesterol,blood pressure, or diabetes in respect of stroke risk but the factor is ignored, and I should not be worrying people on here about such things, but John it is fact and even arthritis action seems to concentrate more on RA & Osteoarthritis. Systemic arthritis causes pain too often more persitent & severe , plus deformity of joints causing movement restriction. Exercise in systemic illness can be a disaster as it flares the illness so arthritis is not a simple matter of what works for this, each one has to be treated as an individual illness , pain control being the number one issue in all types. Must go enjoy your day .

[johnsmith in reply to katieoxo60]

Thanks for the reply. It was very helpful.

[cyberbarn]

Like Katie I have been involved with PPI for a while now, but have become increasingly frustrated by the tokenism that it surrounding it in the NHS. It is really hard to break though and be treated anything other than tokinistically. And sadly it has also lead to poorer care which meant we had to change GP surgeries. So I am taking a few years off from this, finishing my PhD, and by then hopefully we will have had a change of senior NHS England people and a different secretary of state for health which will mean things will be easier for us to be meaningfully involved. But good luck to you! I hope you do well.

[Hidden]

Functioning as I do in PPI in both healthcare and research, I have always felt that I was being heard - even when my views were not taken onboard. On healthcare, I a member of an NHS Clinical Senate and my local GP surgery advisory group. I have also done work for the DHSC on new commissioning guidelines and attend consultation meetings of our local mental healthcare Trust. On clinical research, I do PPI work for NIHR and MRC as well as reviewing grant applications for research funding. I also am a co-applicant on studies around cancer early detection, cancer care in rural communities and dementia care and am one of the decision makers for those studies. On the Citizen Science front, I utilise my computer’s spare processing power to do data collection and processing on issues such as earthquake detection and HIV cures. The role of the Citizen Scientist is very much around the collection of data to facilitate research.

[micox]

Hi John. I've been independently involved in PPI since 2003 (when they abolished Community Health Councils in England). I had my own website which was highly critical of all the Quangoese attempts to make it work. Where and in what form are your meetings.

[johnsmith in reply to micox]

They are a small group of people with a chairperson who reports back to Southern health. I know there has been a lot about Southern Health problems. But what is happening is step in the right direction. In my case there are also conferences I go to where I make the right surrounding words. I now have better words than what I had a few years ago.

There is also much realisation that things must change if the NHS is going to survive. We have an ageing population who require more NHS resources. There is criminal law with teeth that can do things against doctors that were impossible a few years ago. However there is still a long way to go.

I know about the Quangoese attempts where you get nice sounding words and nothing gets done. I been to meetings where paid researchers tell a list of untruths which you cannot challenge because they only allow you to ask questions. I have learnt to provide a bit of truth as background before asking the question.

Whats the website? Not sure if you answer that because of confidential issues.

Communities of Practice (CoPs) has been around for 25 years. I discovered them two years ago. They are dedicated to change and help produce the tools for this.

ncbi.nlm.nih.gov/pmc/articl...

eventbrite.co.uk/o/improvem...

When i joined a CoP I had no idea how ignorant I was of the managerial tools needed for change. They have helped me in ways I did not expect.

[katieoxo60 in reply to johnsmith]

Hi again John , remember when it comes to health & well being the outcomes of meetings effect all, even the bosses use the services and we should all receive them at the same quality across the board the word is called Equality. We all have a right to know also. Therefore we need things to be explained in more basic ways for everyone to understand, and help to represent the less able especially in mental health services where many are treated as if they have no brains as well as suffering mental distress.

[johnsmith in reply to katieoxo60]

Thanks for the reply. I am going to challenge you here. I am looking for robust replies. You raise some important points.

I do not believe in equality. It does not exist. A person who is more skilled and more educated and has more network resources will get more from the NHS. The person who is less skilled actually prevents better services. The services available are reduced in quality to cater for the many who are unskilled. The unskilled tend to do exactly as they are told according to their understanding. The words and explanations used by consultants are geared towards 30 second bullet points which are obvious to the person who said them. There is very little mental engagement by the professional as to what the 30 second bullet point means to the person in front of them.

For example: I give people instruction how to put a cup of water to the mouth to drink as an exercise. The exercise is to take a cup of water of the table to the mouth allowing the hand and arm to follow what gravity dictates. Some people get it within a minute. Other people I am still trying to get the movement exercise done correctly ten minutes later. What I work on in the exercise is a smooth flow of movement that looks pleasant to the eye and has an uplifting effect on the person watching it. One can think of the movements of the great ballet dancers. What I often get is an instinctive grab of the cup and a lifting motion that looks ugly to behold.

In equality everyone is treated the same. With removal of equality patients are treated according to their ability to get the best outcome for the patient.

In the Community that are a lot of people who are talking about removing stigma for mental health issues. I am standing firm about this issue saying there needs to be stigma. I have mental health issues because of my health disability. I can do a lot of things. There are things I can do but cannot do under time restraints and pressure. I need stigma against me to recognise that the pressure and time restraints for certain tasks must not be applied to me and I must be given tasks that do not need time restraints and pressure. The stigma against me will enable me to do those tasks within my ability. A lot of people with mental health issues need to be given tasks within their capability. The issue of no stigma be applied means that they are given tasks that they will fail at. Or there are polite smiles and platitudes given so that the mental health disability person is not upset. The mental health disability person does not develop as a person and is not put in positions where they can develop themselves.

Hoping for a robust reply to improve my wording and thinking.

[katieoxo60 in reply to johnsmith]

Ps Stigamatisation is the act of branding someone due to their illness in the case of mental health based on the presumption right or wrong that the person is unable to comprehend, or the old ancient ideas surrounding mental incapacity and images of mental institutions.

[johnsmith in reply to katieoxo60]

Thanks for the reply. Taken on board what you have said. Is there another word I could use instead?

[katieoxo60]

Consideration might be a better word when accessing your capability rather than disability. Stigma is a pre conceived idea that is very out dated. When considering a persons capability you have to consider their disability in respect of all health issues. It is a bit like the conceived idea that to have a blue badge you need to be in a wheelchair, or that a person with arthritis needs a walking stick. Because someone walks does not mean they are not in pain, pain concepts are similar to mental heath concepts and disability concepts in general. It is these concepts that cause people stress. Maybe emotional distress is better than mental illness in wording. Sorry like you I do go on a bit on certain topics. Enjoy your day

[johnsmith in reply to katieoxo60]

Thanks very helpful.