Local Surgery Patient Participation Group

[TiggerMe]

Our local surgery is looking for participants... I wondered if anyone else has been involved or had any experience?.... whether it is worth my while joining, in the hope of improving matters for other Thyroid patients

[Star13]

I did it for awhile but found it was really there to be a tick box exercise for them and CCG inspections. I did not find that feed back really had much of a positive effect which proved that they were not really interested in the meaning of the group or its purpose. They are mainly formed to pay lip service to the CCG or whatever they are called now.

[mrskiki]

Ours is looking for people too, less noble motive, as I’ve been thinking it would it be a back door into the surgery that I haven’t seen for some time …. ?

[KBird01]

Like Star13 I did this for a while. This was again, just a tick box exercise for the. They over ruled every suggestion we made and insisting, or making a complaint just made you persona non grata at your own surgery. They basically just wanted a 'pet' group.

You might have more luck speaking to the lay person on your local CCG board or healthwtch service if you have one.

Good luck! 😊

[TiggerMe in reply to KBird01]

They already struggle with my candid feedback.... thought I might become a real thorn in their side 😏 I'm a little intrigued as to whether they will accept me 😆

[KBird01 in reply to TiggerMe]

Ah yes, the good old bu**eration factor! Try not to be too let down if it's a 'no' won't you?! 😉🤣

[Blissful in reply to TiggerMe]

They may want you because someone with a fraction of a working brain cell may have grasped that your candid feedback contains many truths, thus you may be perceived as a "danger" (to the status quo). They may want to have the chance to milk you for more (valid) information so as to inform their various Führers who can then prepare inverted rebuttals to any of your "pearls". The inversions would then become e.g. Guidelines etc.

One way or another I see it as another data gathering exercise. Yuval Noah Harari warns that whoever owns the data owns the future.

[TiggerMe in reply to Blissful]

Hmmm... interesting, I would consider the current data they hold on me to be wholly inaccurate, I'm under the care of the Endo currently so I can (and do) rebuff any of their misguided actions.... I just feel I don't want others to be side-lined like I was for so long.... But I hear you, if they won't change their ways I'll end up having to self treat sooner or later so only really sticking with them in the hope I can stand up for change... I can't be bothered to worry about who has my data as I'm sure I have little control over it 😕

[Blissful in reply to TiggerMe]

if they won't change their ways I'll end up having to self treat sooner or later... I can be bothered to worry about who has my data as I'm sure I have little control over it 😕

As a generalisation, "They" don't want to change their ways - I daresay there are a fair few docs, nurses etc. who daily tear their hair out regarding many treatments across the whole of the Harm Service but the system deliberately ensures these people are either too intimidated to be vocal and if they are both vocal and demonstrably effective by stepping outside the "guidelines" then they get e.g. taken before Fitness to Practice "tribunals" and so on. ( e.g. Dr G Skinner)

You are correct, we don't have any control about the mass of personal data being collected without OUR INFORMED CONSENT. I wouldn't volunteer for supplying extra.

I would consider the current data they hold on me to be wholly inaccurate

I expect you are right about that - I think you can check the validity/accuracy of your records in terms of blood test results, operations and so on.

[TiggerMe in reply to Blissful]

We can but hope that when they finally look at the figures properly and realize how many are lost from the tax paying workforce and even worse forced to claim benefits they will be instructed by the government to change their ways 😬

Trouble is that so many have been forced out of the system, self medicate and won't be counted... Will I give away any more than I already do? I'm still angry about my 'treatment' and feel I want to make some noise 🤬

[Espeegee]

My husband sits on ours, well he would if they sat. Each time they invite him they nearly always cancel it. It's not used to address concerns and he generally doesn't get the opportunity to do so. Gripes are not dealt with and I agree, it's a tick box exercise. He's a county councillor and no wimp but each time he comes back sighing at the pointlessness of it.

[HungryHungryHypo]

Whether it is worth your while depends on what kind of person the People Participation Lead is and on whether the doctors within the surgery play ball.

I am part of PP group for another NHS service and it has been amazing and I believe we are making a real difference. But the PP lead is proactive and the NHS team we work with is very receptive and often comes to us for our ideas.

[TiggerMe in reply to HungryHungryHypo]

Good to hear a positive... I'm going to have to give it a try and see aren't I 🤗

Newish team taken over and make a big deal about wanting to improve things...

No doubt they are over-run with women of a certain age with failing thyroids and nothing better to do than moan 😅 so might be a bun fight and rubbish for their demographics

[arTistapple in reply to TiggerMe]

You have been forewarned. If anyone can do it effectively you can. I think you will be brilliant. I find in these sort of groups DO NOT EXPECT BACKING! Whatever you say, look out for yourself. I was a Union Rep for a while. Thankless task. Questions fed through me on behalf of staff, when put to management, everyone sat quietly. Discussion ended abruptly.

[TiggerMe in reply to arTistapple]

Thanks Art🤗... Union Rep sounds hellish 😱

Let's see if I get to bang my gong 😏

[lisabax]

I was part of a group at our surgery but it was mainly concerned with getting the doctors message to the patients rather than vice versa. I certainly couldn’t have hoped to improve the lot of thyroid patients. It may well help staff to understand the frustration of patients in general regarding the current state of the NHS.

[SlowDragon Administrator]

we had two ladies come to speak at our WI about what it involved (and looking for new volunteers) …..it has absolutely NOTHING to do with medical issues.

It was all admin, phone or online systems working better, attempting to get better/easier access to GP etc

Sounded very “box ticking”

[Star13]

if you do decide to try it just watch out for the gaslighting. Also if you try and then leave I don’t think your “relationship” with the practice will be quite the same again so if you do decide to give it up as it’s a waste of time try a step lightly for a few meetings (if they ever have them) so you can leave on a excuse of other commitments. I too found the frequency of meetings got less and less until they were about every 6 months!

[TiggerMe in reply to Star13]

Yes, you are likely right... I already have no faith in them but they are handy now I know how to handle them.... so far.... I avoid the Dr's and only really deal with nurses and admin atm 😊

I just don't know.... the local parish council are trying to sign me up but I just can't imagine me in that roll 😳I really don't like people much 😂

[Hidden in reply to TiggerMe]

You don't have to like people to be a parish councillor. 😂 You just have to care about where you live.

[TiggerMe in reply to Hidden]

It's the thought of those boring meetings about dog poo and horrid neighbours... In the moment I was put on the spot I said 'I'm better suited to being a covert councillor' 😆

[Hidden in reply to TiggerMe]

Ah, but they're only boring because you've got boring councillors.

Parish councils need more people like you, Eeyore to inject a bit of oomph into them!

Parish councils are more important than people think. ✊🏼

[TiggerMe in reply to Hidden]

🤓 are you a closet parish councillor?

To be fair the chair is a dry wit, funny guy but the vice is a stuffed shirt 👔

[Hidden in reply to TiggerMe]

I can neither confirm nor deny that!

[TiggerMe in reply to Hidden]

Oh 😆

[Regenallotment in reply to TiggerMe]

I was a Parish Councillor once… never never again. Resigned on the spot when a fellow counsellor drunkenly argued with valid concerns from the public about reinstating a pond in on corner of a busy road at a village meeting… down south 21 years ago….avoid avoid 😬

[TiggerMe in reply to Regenallotment]

This is my gut reaction... I'm just going to stick with being a vigilante and undercover snitcher to the parish council... much more fun 😏

[Regenallotment in reply to TiggerMe]

yep, hold them to account 👏

[Star13]

🤣I know how you feel!

[Miffie]

I volunteered ages ago and this week had an email saying no more ‘in person’ members were needed. They are just starting up again after Covid and the same members who were previously on the panel will stay in place for next 3 years. However they are additionally setting up a ‘virtual’ group with around 20 vacancies. Ok I thought, clink the link to read role and responsibilities then respond. Only valid for 31 days. When I tried to respond I was ‘out of time to respond’. First thought I has was the surgery could not organise a party in the proverbial. Next thought I cannot be bothered with them! If you have the patience? Good luck. 😊