FEEDBACK FROM PATIENT PARTICIPATION GROUP (PPG) AND DIABETIC GROUP MEETINGS

[Debandez]

It seems that a few forum members have joined our local PPGs and/or diabetic groups and thought it would be a good idea to create a thread to post the feed back into as a point of reference and also for information for anyone that might be interested.

I joined my local diabetic group in October. I missed the November meeting as it was my wedding anniversary and the December meeting was the Christmas night out.

Here are the details from the evening for info, post copied from my FBS post due to time constraints:

6.4 today. And my little bit of chat won't be as little as it should be but you know me I expected my BS to be in the 6s as i was out for a meal last night, so I'm not in the slightest bit surprised. The diabetic group Xmas night out. Which was full of surprises! Ive only been to one meeting, Octobers. Novembers i couldnt make as it was my wedding anniversary. And Decembers was in actual fact last nights meal. We met at a really lovely restaurant that is renown for a cracking carvery. About 20 of us. And on a Monday its BOGOF. So 2 for £8! Everyone is really friendly. Some partners were there. My hubby was invited. He is a great mixer and before long we were chatting with everyone and anyone whilst perusing the menu. I got excited. Halloumi fries in the starters section. I'm in! I plumped for the carvery. The safe option. I will tell you a bit about the food first.and what was eaten. Most had starters. Many had prawn cocktail. This came with 2 slices of crusty white bread on the side. I wondered if this might be left to one side. Indeed not. Well, it is xmas. Everyone went for the carvery option. Now I'm not one to watch what others eat. Well i should rephrase that. I never used to be! Til dx. I couldnt help but notice everyones plates were full.... to capacity. 2 yorkshires in many cases and enough roasties/potatoes to sink a battleship. Lots of veg, stuffing, gravy etc. Then dessert options. A few went for the caramel ice cream (large). Others the xmas pudding with custard. I was full. No cheese board anyway so i wouldnt have bothered. I would normally love to see people enjoying their food. And bye God they were. But I felt really really sad. At this point i had mingled and chatted with quite a few of the group around and about me. Diabetes came up as you would expect. No they dont monitor their BS. Even the insulin dependent ones 'not that often'. Told not to bother. Their diabetes has been progressive. Many taking 2 or more meds just for diabetes. Others saying they 'rattle' with the amount of tablets they take. Do you know your hba1c I asked a couple but they didn't. They just put their lives in the hands of the medical team. Apart from 3 of those there (myself included) all were extremely over weight. No doubt over weight due to the insulin! And they eat what they like, apart from cutting back on 'sugar'. I brought up carbs being sugar. The 2 ladies in on this conversation had no clue how much sugar was in bread, pasta, pots, rice. They have been diabetic for many years. Probably never been on a DESMOND course. I told her i dont eat those high carb foods, or extremely rarely. One of the ladies reacted with a shocked expression 'what, you dont eat any of those things, what DO you eat'. I said mainly eggs for breaky. Another horrified look. The lady was warned off eggs due to cholestrol being high. She doesn't touch them for that reason. I could go on. It was the exact opposite of the diabetic dining experience I thoroughly enjoyed in September in Birmingham which made me very happy and very proud to be a part of a group of such focused individuals taking back control of.l their health. These poor people still put their faith and health in the NHS who ate letting them down and in fact slowly killing them.

The organiser who has been t2d for over 15 years who says hers is 'progressive' has asked me to talk about my journey at the next meeting in January. I was looking forward to it. Kind of thinking about structuring it like a training session until some of the kind forum members advised me against this. Rightly so. Gently does it. It's going to be extremely challenging! I want to be as helpful in my 30-40 minutes as possible. But after last night I can see what I'm up against. They are all so lovely and have been through so much on their individual journeys (the lady opposite me is registered blind, she has liver problems due to tablets she took in 2008 which she thinks gave her t2d). She is so very tiny now and in very poor health. She hasn't been out since July. She was so enjoying her food and the chats. My heart felt so heavy. Wanting to help and offer guidance on controlling BS and helping them feel better, yet knowing I'm going to be going into what they really should not be eating to regain health. This particular lady was 76, lives on her own and is frail looking too. I'm going to talk about my journey (@xfieldok is on board, we will do it as a team which i think will work really well). Going to hand out leaflets with useful info on. Not sure exactly what useful info at this point but @Rachox your fab BS leaflet will be one of the handouts! If one person gets something out of it it will be worth out. And the word might spread.

 

[Debandez]

Here is the feed back from my 1st PPG meeting 11 weeks ago and my 2nd meeting a month later:

I've been to my first PPG. Tuesday evening 6pm til 8pm. It was only a discussion about a new medical centre with an overview but food supplied for us. Sandwiches, sausage rolls, crisps and a ring of chocolate and vanilla cup cakes of the large variety! Of course I didn't partake of one teeny morcil but my taste buds were doing summersalts throughput the 120 minutes. My eyes had a mind of their own and wouldn't stop looking at the food! Beads of sweat on my brow. Close up and personal to my old favourites. I can walk around Tesco and not bat an eyelid. What's that all about. Anyway I survived that ordeal!

Then my 2nd PPG yesterday. I was hoping it would not be a similar battle. Nope. Phew. Just 3 boxes of jaffa cakes this time, lemon and lime, strawberry and orange. The chairman was actually confronted in a jokey way about it, to which he replied 'it works as part of your 5 a day'. I'm happy that i have never been partial to jaffa cakes!

One of the attendees was there on behalf of the CCG. A senior nurse. I introduced myself to her and took the opportunity to give the background as to why I had joined. At the end of the meeting we had a quick chat. She asked what I thought of the DESMOND course. Her eyes started to glaze over as I was telling her. Lots of work to be done! Anyway I now have the contact number for someone who runs the patient diabetes get togethers also held at Tescos once a month and I'm going to contact today.

 

[Member496333]

Great ongoing work, Deborah. Rolling my eyes in my head at the food on offer and the “five-a-day” nonsense. I think I’d probably have given up at the first hurdle if that’s what’s presented to people at a diabetes group. You deserve a medal

 

[Goonergal]

Thanks @Debandez for getting the ball rolling (as ever!).

Went to my first PPG on Tuesday evening. Only 5 of us there and only 2 of us said very much! Very promising however:

- Run by a very impressive member of the Admin team. Practice Manager usually goes but had injured himself.
- On the agenda were group consultations for patients. Groups focusing on diabetes are on the agenda (it’s these that my GP and nurse have previously mentioned about me giving talks at). Asked for advice on how to follow up on those and the woman running the PPG is going to speak to the relevant doctor. She’s also said I can email her.
- Finally learned how I can get access to my records/blood test results online: seems that this woman is the person that makes things happen in the practice.

No food had been laid out but we were offered mince pies (no one took up offer), tea, coffee, orange or apple juice. I opted for cold water from the dispenser in the corner!

 

[NicoleC1971]

Good thread!
To the OP, I plan to run a low carb Walk and Talk group and in week 1 I will use a quiz around type 2 (nicked it from this site!) to get the ice broken in a non lecturing way.
To add to the bad food at meetings topic, I was recently at a CCG diabetes committe to talk about our planned course where I competed for attention with a massive tub of Celebrations! No irony.

 

[Debandez]

Thanks @Debandez for getting the ball rolling (as ever!).

Went to my first PPG on Tuesday evening. Only 5 of us there and only 2 of us said very much! Very promising however:

- Run by a very impressive member of the Admin team. Practice Manager usually goes but had injured himself.
- On the agenda were group consultations for patients. Groups focusing on diabetes are on the agenda (it’s these that my GP and nurse have previously mentioned about me giving talks at). Asked for advice on how to follow up on those and the woman running the PPG is going to speak to the relevant doctor. She’s also said I can email her.
- Finally learned how I can get access to my records/blood test results online: seems that this woman is the person that makes things happen in the practice.

No food had been laid out but we were offered mince pies (no one took up offer), tea, coffee, orange or apple juice. I opted for cold water from the dispenser in the corner!

Loving this thread. We can cross ref how different PPGs run and learn from each other. We can help and guide our surgeries.

Lots of focus on diabetes and that's a good thing. You will be amazing at giving talks! What a wonderful resource you are for your surgery. They are very lucky. Let's get our heads together @Goonergal to format our sessions. Isn't it exciting.

 

[Debandez]

Good thread!
To the OP, I plan to run a low carb Walk and Talk group and in week 1 I will use a quiz around type 2 (nicked it from this site!) to get the ice broken in a non lecturing way.
To add to the bad food at meetings topic, I was recently at a CCG diabetes committe to talk about our planned course where I competed for attention with a massive tub of Celebrations! No irony.

Fantastic. Love it. As for the celebrations, I'm really not at all surprised!!!

 

[Keith Evans]

Do you know if there is something like this in the Doncaster area?

 

[DCUKMod]

Do you know if there is something like this in the Doncaster area?

Keith - In my area, most surgeries have Patient Participation Groups. You can find out a bit mor about PPGs here: https://www.napp.org.uk/ppgintro.html

If your surgery has a website, you might find reference to theirr PPG (if they have one), there. On my surgery's website, thereis a PPG heading, with their terms of reference and aims, as we as an online application form to join.

 

[Goonergal]

Keith - In my area, most surgeries have Patient Participation Groups. You can find out a bit mor about PPGs here: https://www.napp.org.uk/ppgintro.html

If your surgery has a website, you might find reference to theirr PPG (if they have one), there. On my surgery's website, thereis a PPG heading, with their terms of reference and aims, as we as an online application form to join.

Same here @Keith Evans - signed up to the PPG via the practice website.

 

[Bluetit1802]

There are posters up all over the surgery waiting room at my practice asking for volunteers to join the PPG. It is also on their website.

 

[Goonergal]

Hi all. Just back from my second ever PPG meeting,

Meeting was very frustrating on one level - some people just waffle on and on about nothing. However, some fantastic news - the surgery are having their first ever patient group consultation on Type 2 Diabetes, focusing on weight management and lifestyle. And I am invited!

Have been told to email the practice to get in touch with the nurse who will run it (she’s the practice Jason Fung fan). Spoke to the practice manager (first time I’ve met him - he and the administrator who runs the PPG are both seriously impressive) about doing a lot more to help out and he’s going to raise it with the doctors.

AND he’s going to sort out my online access to my medical records!

Diabetes group is towards the end of April so will report back after that.

 

[shelley262]

Hi all. Just back from my second ever PPG meeting,

Meeting was very frustrating on one level - some people just waffle on and on about nothing. However, some fantastic news - the surgery are having their first ever patient group consultation on Type 2 Diabetes, focusing on weight management and lifestyle. And I am invited!

Have been told to email the practice to get in touch with the nurse who will run it (she’s the practice Jason Fung fan). Spoke to the practice manager (first time I’ve met him - he and the administrator who runs the PPG are both seriously impressive) about doing a lot more to help out and he’s going to raise it with the doctors.

AND he’s going to sort out my online access to my medical records!

Diabetes group is towards the end of April so will report back after that.

Well done @Goonergal youre doing your bit go girl

 

[Freema]

Hi all. Just back from my second ever PPG meeting,

Meeting was very frustrating on one level - some people just waffle on and on about nothing. However, some fantastic news - the surgery are having their first ever patient group consultation on Type 2 Diabetes, focusing on weight management and lifestyle. And I am invited!

Have been told to email the practice to get in touch with the nurse who will run it (she’s the practice Jason Fung fan). Spoke to the practice manager (first time I’ve met him - he and the administrator who runs the PPG are both seriously impressive) about doing a lot more to help out and he’s going to raise it with the doctors.

AND he’s going to sort out my online access to my medical records!

Diabetes group is towards the end of April so will report back after that.

Wow well now the tide is turning

 

[Goonergal]

Wow well now the tide is turning

Let’s hope so.

 

[DJC3]

Great stuff @Goonergal and I’m so impressed the nurse is a Jason Fung fan.

 

[Listlad]

Wow well now the tide is turning

I think it is. Thats what I am seeing.

 

[bulkbiker]

We have so far had 2 meetings re diabetes care at our practise prompted by some of the PPG members (mainly me and one other). There does seem to be some movement in that our Head Partner had instigated an audit of the standard of care just after we raised our issues so they knew their processes were going wrong and the Area Diabetes Nurse seemed much more on board with Low Carb than anyone at the surgery which was a plus as she has attended both meetings. Still early days but there does seem to b a glimmer of hope that they are looking to make some changes which may involve a few meetings for the newly diagnosed where I hope to be allowed to propose Low Carb rather than medication. There are also moves to get some of the longer diagnosed patients off insulin and onto other meds, although I'm not yet convinced that this is such a great idea looking at the meds being suggested. Time will tell.

 

[Charis1213]

I got invited but i threw the letter in the bin didn't want to focus on diabetes .

 

[Goonergal]

Bit of an old thread, but in the interests of keeping everything in the same place ......

Attended a group consultation for type 2 diabetes at my local surgery today. Was invited along to share some of my experiences of using diet to improve diabetes with others with type 2.

Very interesting. The nurse is obviously keen on low carb - she described carbs as toxic for type 2s, yet seems to be hamstrung by official policy as she was also telling people to limit themselves to 2 portions of fruit a day! Looked like she was just trying to get people to make small changes and I get that, but can’t help thinking it would be better to be more directive.

It was eye opening to see what they’re eating - one person has cereal that includes dried fruit, a banana and another piece of fruit for breakfast and a sandwich for lunch. He was looking for solutions for the sandwich - she suggested skipping lunch and talked a bit about limiting when you eat. She later asked me if I’d read Jason Fung.

None of them were testing, although one person has a son with type 1 and knew about the Libre.

They were plugging the Newcastle diet - seems our local CCG is keen on it, but didn’t mention the low carb program.
I handed her the PHC pack of posters and info graphic cards along with a letter from Dr Unwin and also said I would be interested in running a low carb group. She said that was an interesting idea and it’d be helpful to have an expert patient and said to leave it with her. Will see if they get back to me. Going to use my next HbA1c as an excuse to follow up in a couple of months time.

So heartening in one way but also clear just how far there is to go.