new surgery just doesn’t understand.

[MSTKing]

I have moved home and am with a new surgery. My last doctors were quite liberal in prescribing but with me that felt justifiable. I have spinal cord injuries, a below knee amputation and osteoporosis and kyphosis.

This new surgery freaked out about the amount of MST I was on so I halved it. Now, a new problem has emerged unfortunately over the Christmas period but getting them to give me some quick acting morphine on a PRN basis is proving to be quite a battle. Meanwhile, pain is stopping me sleeping - putting the pressure sore at further risk and I feel in despair.

[Nifflerluck]

Hi MSTKing, sorry to hear you having a bhorrible time with the new GP. Could you maybe ring 111 and explain the situation to them? I have found them to be very helpful in the past when I had issues with my GP and prescribing.Or is there another GP you could speak to. I found post major surgery on my leg, 1 GP wanted to stop all pain meds immediately even though I'd just had surgery and had to pretty much argue and beg for meds and the following week spoke to a different GP at same practice who was the opposite so there doesn't seem to be a set standard.

Failing the above I would contact the practice manager and ask for a meeting to discuss.

Good luck !

Regards

J

[MSTKing in reply to Nifflerluck]

Thank you. Yes, I have found 111 helpful in the past. I have managed to get on the list for a phone call this morning with one of the doctors so I’m hoping she actually listens to what I’m saying and does a prescription. After living with these disabilities since an accident aged 18 (30 odd years ago) I know what works and what doesn’t work. If I get nowhere today (really hoping that isn’t the score) I think it will be time to try and see if 111 can suggest anything or try and find a new surgery. Thanks for your reply - much appreciated.

[cyberbarn]

Another route to follow beside NHS 111 which is immediate, is to contact the practice manager. You can word it as 'I need to know how to get my normal medications that I have been on for years' rather than starting at complaint level, and that might work. If it doesn't then tell the practice manager that you would like to make a formal complaint. Hopefully you won't have to, they will realise that they need to do their job!

Another option is to contact the local PALS department. That gets you through to the ICS (Integrated Care System) which has replaced the CCG (Clinical Commissioning Group) and they can help you figure out whether this is a broad policy or just a GP that isn't listening. And if this is a prescribing policy, they can hopefully help you bypass that.

As you say, you know yourself and what is needed. I hope they listen to you today!

[Jinnty89 in reply to cyberbarn]

Hello MSTKing, unfortunately this is a UK wide thing that is going on. Apparently some “pain” doesn’t respond to opioids which to me is a load of crock, but every GP practice has been told to try to stop prescribing opioids no matter how long or what dose you are on. My 32 year old son was on them for severe neuropathy in his feet and was managing to have some kind of life, they stopped them as according to some expert it doesn’t work for this even though he argued it did. But, long story short you will probably have to start fighting for your medication now. Good luck and I’m sorry to give you the bad news on this.

[MSTKing in reply to Jinnty89]

yep - I’ve been left without the GP call. Feeling scared about coming weekend.

[Jinnty89 in reply to MSTKing]

call your local hospital and explain you have run out. Opioids are addictive, and people who take them are medically, medically add, I don’t like that word addiction but it’s a medical thing for people like us. You will have withdrawal symptoms unless you get some, so call 111 again and stress your urgency or call your local hospital and explain you have run out. Please please don’t leave it any longer get on the phone and start calling them now including your GP if that’s still open. They cannot leave you in a withdraw state. Opioid use has to come down gradually. So please start calling. Good luck

[DENZ01 in reply to MSTKing]

Hello

I have just been reading through your message and some of the replies.

I am truly sorry for the trouble you are having, I certainly understand how you feel.

I have also been taking numerous painkillers for over 40 years now (numerous spinal surgeries & now other issues).

These GP''s are really, really getting on my nerves now! They definitely do not understand the impact this has on your day to day life.

The only other thing that I can suggest (other kind people on here have already suggested 111), after the surgery closes this evening, phone the number of the surgery & you should be given an "out of hour's GP number", I suggest that you telephone them & see if they can help you over the weekend & public holidays next week. They are usually very understanding & very helpful.

I certainly hope that you can sort your new GP surgery out with your medication, it is most unfair.

I know that I haven't been of much help, but what little I have advised, I truly hope that you get some help urgently. I truly do understand how you're feeling, I have been in your position more times than I care to count.

Best wishes 🫠

[MSTKing in reply to DENZ01]

thanks - I am really upset - I’m not sure I will manage this weekend.

[DENZ01 in reply to MSTKing]

Hello

I honestly understand how upset & anxious that you are feeling, I have been left in the exactly the same position as yourself & it is truly very upsetting (I know that this doesn't help your situation!)

Please phone your GP surgery's number after hours & you should be given an "emergency doctor number" to call. PLEASE try that. Or, just persist with 111.

If you need to chat, just send a message.

I truly hope and pray 🙏 that you get the medication you urgently need over the weekend 🙏

Best wishes x

[MSTKing in reply to DENZ01]

thanks - what they are saying is they want the x-Ray results (of my injury - a big bone sticking out of my back) before they will consider some non-opiate pain relief. It’s bizarre.

[DENZ01 in reply to MSTKing]

It sounds truly ridiculous and shameful that this is happening. I wish that I could have more useful advice, but I have no other clue what you can do.

I will pop onto here now & again to see if you've managed to get something (if only until the new year!)

[MSTKing in reply to DENZ01]

Thanks - what’s making me angry now is they want me to accept District Nurses who pass everything onto the GP. Yet when I need something they don’t want to know. It hardly seems fair. The sore can be managed by myself now -to make it fair.

[DENZ01 in reply to MSTKing]

Hello

I understand what you mean about the district nurse as well! I try to save the NHS money by looking after my own pressure sores! Yet they insist on WEEKLY appointments and supply me far too many products!

You just can't seem to receive the help that you actually really need!

[MSTKing in reply to DENZ01]

I just don’t like the idea of them choosing to help me with that but ignore my pain and recent injury - picture here - this is the bone sticking out of my back. I’m going to try and find a different doctor next week.

Photo of bone sticking out of my back.

[MSTKing in reply to MSTKing]

it’s because they get scored badly if they have patients with pressure sores but pain doesn’t seem to be a priority even when it’s an injury.

[DENZ01 in reply to MSTKing]

I can see the bone sticking out, I also have the same issue in my spine & screws sticking out in my neck.

The reason the GPS give is that opiates are not good for long term, chronic pain!

I think that you should telephone 111 and really insist that you are given an appointment with one of the doctors today or tomorrow as you are in tremendous pain.

You will have to be persistent.

[MSTKing in reply to DENZ01]

I think I really had enough of their attitude today and will bide my time to try and escape this practice - it has a dreadful reputation. Wish I knew that before I came here. I have a stash of other type of meds - some MST - some pregabalin- stuff they don’t know I have. If it means self medicate and hope for the best - that will be it.

[DENZ01 in reply to MSTKing]

I have found Pregabalin to be one of the best medications that work for me.

I have also done the same, if necessary, self-medicate 🤷 sometimes, we just have to help ourselves.

I really hope that you get some proper medical care soon. (I'm waiting for several different specialists to help me 🙄)

Best wishes

[MSTKing in reply to DENZ01]

I agree. They’ve got a ‘thing’ about that too - when I asked for an increase. I think because it’s now a cd too.

Thanks for chatting with me - much appreciated. I’m stuck on my own with this stuff (bar staff) so it helps to talk albeit virtually.

[MSTKing in reply to DENZ01]

good luck in your search for specialist help. Spinal stuff can be so painful and life-limiting and does lead to a myriad of other conditions and disabilities. Good luck and hope this new year is better for you.

[DENZ01 in reply to MSTKing]

I was born with Spina bifida and have had 8 surgeries & yes, unfortunately it does lead to numerous other health problems.

I'm at the point of starting to wonder if I should start refusing any further medical help (apart from my monthly prescriptions), as I don't ever seem to get very far!

I hope that you have better luck in the new year with another GP surgery & ongoing help.

Best wishes

[MSTKing in reply to DENZ01]

that’s exactly where I am. It just seems to lead to hassle and a life overrun with appointments etc. it’s a big decision but I understand it completely.

[MSTKing in reply to DENZ01]

the doctor thinks the rib has been broken but healed in the wrong position.

[Konagirl60 in reply to MSTKing]

Didn’t your other GP send medical notes with you so the new doctor would have proof of your condition? Can you get your former GP to fax the information to the new surgery.

You are not being treated with competence or compassion. I’m so sorry the new surgery is doing this to you. It’s not right. Don’t let them neglect you. You’re not an addict. You have a permanent injury.

[MSTKing]

Thanks so much - that’s good advice. I’ve not thought about contacting the practice manager or what I should say (if required) so that’s helpful.

Really hoping that in an hour or two I get a call and that they actually listen to what I’m saying!

Thanks again for the advice. Hoping we all have a healthier, more bearable new year.