Fibromyalgia Action UK
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Hi honey I'm home again

So good to be back. Sort of. People might find this useful. My gp has written a Care Plan, which details all the conditions I have, and how they impact on my lifestyle. I think it purpose is to help in the event of an emergency, + who to contact. It has also occurred to me it will be useful next year when my DLA is up for reassessment to PIP. If you have a good relationship with your gp, worth asking for one. Mental health use them a lot as well. Wish everyone well, have a good night. Tulip xx

15 Replies

Hi tulips123

I sincerely hope that you are feeling as well as you possibly can be today? I have just been put on the special patients register also! My GP told me that you get a named GP and a care coordinator to help prevent hospital admissions. They will contact all of your Consultants and Specialist, clinics and other medical specialists used to share information about your health. It sounds like quite a good idea?

I think that you are completely right about using this when you need to change over from DLA to PIP? As you have a written letter in your hand, a health care coordinator and a GP written acknowledgement of any and all health complaints, so it should come in really useful?

All my hopes and dreams for you

Ken x


I have a community matron who's purpose is to keep me out of hospital - she's great! My gp - I'm pretty sure - the best in town. My daughter wants me to move but I refuse to risk losing my gp. My daughter is only a short bus ride away so NOT happening! Thank you for your kind words. Tulip

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This sounds absolutely brilliant and very useful when you have to apply for PIP. No I wouldn't move unless you have to as having a good GP is in my mind like winning the lottery.


Are there special conditions necessary for getting one of these special health care plans? I ask because I have just submitted my DLA renewal ( no news yet!) and one of the GPs in the practice said the practice would contact me when the doctors letter came in so I could be there to give the relevant info when it was being filled. I got the call, but my so helpful GP was on holidays and one of the others looked at me strangely when I repeated what she had said. He told me that the powers that be should be able to read my records and extract the relevant information from them.

As far as I could tell the form had minimum information on it. I kept repeating that I had been challenged at previous appeals as to why my GP hadn't said this or that on his report his answer? How can he know the minutae of my daily left as to what I can or cannot do-whatever I put on the form should be sufficient. I left the surgery feeling it had all been a waste of time. How naive can these doctors be?? I am still waiting for the brown envelope to drop through the letterbox but am not getting my hopes up that my higher level mobility will be left unchanged or that they will award me middle care, which they reduced to lower care last time round.

Anyone who has a supportive GP-HANG ON TO THEM!!!!!


Rotten luck! Does not sound good. If you get the wrong result, It might be worth talking to the sympathetic gp about appealing on the grounds your gp who knows you was not available at the time and it would appear the claim did not give all relevant info. etc. That's so not right.

I'm very lucky with the care I have from my gp. I believe she has taken care to word everything, total 100% accurate, with DWP in mind. More switched on than the average gp. I hope you can work it out. Tulip xx


How fantastic to have such a forward thinking and pro-active health professional. I used to have these 'plans' with people with learning disabilities and found them invaluable. I often thought how much time they would save for anyone, especially those with multiple conditions and on different medications. When I was rushed to hospital last year, they couldn't even get my notes and medication dosages from my GP surgery, (I was in no fit state to give this information). I'm on so many different meds that can interact with others that it is imperative that current medication is known.

I so very nearly didn't survive that episode so I now have my own plan.

1. I have 4 x 1weekly tablet organisers and I fill these once a month. (I receive my meds monthly).

2. I have a list in each of all medication and dosage.

3. I list any special needs.

4. I make sure there is the latest INR reading in the current organiser. (This is for warfarin users).

This is just an idea which works for me but could be changed for individual needs. I wear a medi-alert bracelet too. X.


Totally agree. Without order would be in a terrible mess! I have the blister pack trays. Two probs - can no longer open them, + many meds subject to changes pharmacist couldn't keep up! Carers are still not given credit due to them. It could be worse. I feel like I need to 'chat' but I'm too tired. G'night. Tulip xx


Mines not a blister pack, just an organiser from well known very large chemist. Easy to open and use. Take care. X.


Thank you for that,, something to look into. Tulip xx


Hello Gramma, I have just read your post about the totally unhelpful gp, not co-operating with the hospital, when you were in crisis, stupid people likely the reception staff being know nothings.

My medical notes are on file sharing with the hospital, so access is not a problem it was meant to be the nhs system, have your health area started using this system? Every visit gets the notes and reports in place, and then the gp can look up the results, when they get round to it.

Have you put in a complaint to the pct, and lcc group? bums need kicking in a big way, or even sackings, when hospitals ring for help it should have been given, no nonsense about it.

Glad to hear you have now got your own system with your medications and things in tablet boxes, and do you update your medic alert details at each change?, the hospital uses these things.

I hope you have now got better now, and the outlook is looking good, ttfn


Well I survived that episode anyway. It scared me so much and that was the reason I organised my meds and info etc. The other reason being that my meds dosage is different on certain days. I did complain and went through all the right channels but seemed to hit a brick wall. I was told that if I was dissatisfied with that GP practice I could go elsewhere!! I had no issue with the hospital at all. x.


Hello Tulip123,

Thank You for your post. It reminded me of a post I once wrote about an Emergancy Care Plan if you have one main carer and they were taking ill suddenly or for if any other reason cannit care for you it is best to have this plan. I have one!

Here's the link to that post which also mentions other safety issues to consider, hope it helps somebody maybe?

I used to have a community matron but alias funding issues have meant I have lost this service. Which is a great shame as I personally feel all Fibro & ME patients should be eligible for this service as it really helped me too. For several reasons, however two stick out in my mind - Able to monitor condition more often, bloods etc & seeing us in our own homes more regularly therefore seeing how Fibro truly affects us!

I, concur if you find a good GP best to stick with them if you can! Plus if you guys come across Fibro friendly Healthcare Professionals don't forget to email us the details for the website so others can find help in their own area.

Best Wishes

Emma :)

FibroAction Administrator


I didn't think of that, thanks Em. Just wanted to add, you do an amazing job under tough circumstances. Hope you sleep well. Tulip xx


If you have a great GP you have to keep them BUT if you have one so uncooperative (or who's staff is so uncooperative) find another GP right away. They can make or break any claims you file for assistance, up to & including disability claims!!

The care plans are excellent when prepared by your GP. Problem is few GP's will take the time. Making your own plan and/or emergency information sheet is also an excellent idea, if you are able. My problem was I couldn't focus enough to recall all the info to make one. My GP wouldn't do one without charging me $75.

Sooo....My hubby found a 3rd option :-) He took a blank hospital admit form (because they want soooo much info about everything) and we worked together on one (with me remembering info or us digging through papers to find info.) It took us an entire weekend to fill it out completely. Then he typed all my info up on the computer, printed a copy & we made me a GP appointment. Hubby went with me, my GP read my "Emergency Information Sheet" & then signed he signed it!! He put a copy in my file & he didn't charge us a dime because we did all the work.

I keep a copy in my purse & one clipped on my refrigerator in an envelope marked in red "EMERGENCY INFO"

It is so blissful to just print a copy to give to new doctors or hospital admission nurse. MUCH EASIER not having to fight to remember everything while dealing with whatever medical issue is going on right then!!

Once, while having a mini-stroke, I even told the paramedics to pull it off fridge when they wanted info right then. Heck...I was blind I one eye, having an anxiety attack & fibro fog! They were actually happy to have the info for them :-)

Oh...easy to update too because it is saved on the computer.

I pray that each of you has a family member, friend, healthcare aide or case manager who can help you put one together, if you want to have one. God Bless


Thank you, useful info. Have the general website seen it? Great thing to share ideas, that's why I love this website, use to feel so isolated. God's love be with you. Tulip xx


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