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(52 Posts)
gentleshores Wed 04-Dec-24 14:42:55

I really feel thrown on the scrap heap. After almost three years I’m in a worse state, knock on conditions due to lack of mobility and can’t get anyone to do anything. I jumped through all the hoops - physio assessment two years ago - told me to take painkillers (I can hardly walk). Told to keep active and tore muscles due to bad posture with not being able to bend knees. That keeps reoccurring. Finally got MEI scans earlier this year after it got so bad I couldn’t walk at all. But still told GP can’t refer to a specialist - only musculoskeletal clinic. It was all taking too long - paid to see a oryvste specialist (I was in a wheelchair by then) which I posted about on here as it was such an awful experience and really upset me. He didn’t even seem interested and kept referring to my age. So back to GP for the referral to musculoskeletal clinic and a long wait. Finally got the letter through and it’s a referral to physio again. Right back to where I started.

It’s cartilage. I know stem cell injections are available but only on the NHS at the other end of the country and can’t get a referral.

So can’t walk and haven’t been able to use my right arm for months. GP just said don’t think there’s anything I can do. That is no help. What next - another private specialist?

theworriedwell Sat 07-Dec-24 09:09:39

The NHS physio service where I am is excellent. I was begging for a referral and hoping for a new hip a year ago but it wasn't necessary. Physios are professionals and I think they are getting a hard time on here. As my GP said physios know more about joint problems than the average GP.

Drina01 Fri 06-Dec-24 20:21:39

I do have sympathy for / with you. Yes the referral has to (well for me anyway) go via GP then ordinary physio then some kind of escalation to a higher physio then the referral. Because I paid for my Consultant I had their backing and the proof of simpler treatment I had tried already. Once I got to the stage of jumping back into nhs (because of cost) the higher physio could see clearly the effort the Consultant had made and that they could realistically do no more for me. I have to say it was an uphill struggle but got there. I had plenty of tears along the way. If I was to choose between the physio and chiropractor in my home town I would say chiropractor took the edge of it and was prepared to give it the best go. The private physio was good but got to the stage where she specifically said go back to your GP I will back you I can’t do anymore. So I had that ammunition too. If you can afford it try private physio or chiropractor - I find (as usual because time is money and you pay for that) you pay for their specific time and they listen and assess you. The short time you get on nhs does I’m sorry to say nothing. I should also add I tried acupuncture which did nothing. I do wish you well and hope you improve. Be direct with them all but not confrontational. Get them on your side.

Iam64 Fri 06-Dec-24 20:07:56

Physio can help delay or prevent surgery

theworriedwell Fri 06-Dec-24 19:34:43

But you need the referral and if it has to come from the physio surely you need to see the physio.

gentleshores Fri 06-Dec-24 16:51:15

It's both knees! It's like I have two broken legs. I keep saying that. I agree that doing physio doesn't fix everything. To my mind surgery first, physio after. I'm at the point now where it's too painful to do physio exercises as well.

theworriedwell Fri 06-Dec-24 15:49:25

gentleshores

theworriedwell

Where I live, south west, the doctor can't refer you to orthopedics. You have to go through the physio dept and only get a referral if the physio will do it. You self refer to the physio so the GP has nothing to do with any of it.

I think some areas do have that policy - they want everyone to self refer to physio and have an assessment and the physio decides if you need an MRI scan or to see a specialist. I went through that process 2 years ago and the physio decided I didn't need either - just take painkillers and do exercise and keep active - which I did for a year but I didn't fix anything and I got knock on conditions and then got worse. Hence the GP finally sent me for MRI scans - but then said- can't refer to a specialist.

Since when were physios Doctors/Gods who decided your life? I think they're just trying to keep waiting lists down.

If the GP can't do a referral due to the policy I'm not sure what he can do. Can you go back to physio, good chance you'd see a different physio. I think you said your knee is the problem, you can ask if there is a physio who specialises in knees, one of my GC had a sporting injury and his shoulder wouldn't heel but he got transferred to a physio who was a specialist in shoulders, it meant we had to travel to another hospital but it was worth it and she soon sorted it out. I think it took about six weeks after months of treatment that was going nowhere.

theworriedwell Fri 06-Dec-24 15:43:10

Allira

^I can of course see the logic in strengthening muscles around damaged joints to protect them, but in many cases, joint replacement is the only answer, despite what the therapists might claim.^

Yes. I was told "Do these exercises and you may never need a joint replacement".
It does not work.

Sometimes it does. This time last year I was crying with pain. After physio and chiropractic I'm fine. Initially the physio suggested a steroid injection into the joint to help but when I turned up to have it done we agreed I was improving and to delay it, apparently the steroid injection can only happen 2 or 3 times and we both felt I could hold that in case of problems in future. A year on I can do a 2 or 3 hour walk without any issues, could probably do more but due to caring duties I haven't got time. I do live on a very steep hill and it is no problem to me.

I'm not sure which helped most the physio or the chiropractor.

Allira Fri 06-Dec-24 14:29:08

I can of course see the logic in strengthening muscles around damaged joints to protect them, but in many cases, joint replacement is the only answer, despite what the therapists might claim.

Yes. I was told "Do these exercises and you may never need a joint replacement".
It does not work.

JenniferEccles Fri 06-Dec-24 14:00:21

I do think some physiotherapists have an exaggerated view of just what physiotherapy can do.

I can of course see the logic in strengthening muscles around damaged joints to protect them, but in many cases, joint replacement is the only answer, despite what the therapists might claim.

The orthopaedic surgeon you saw sounds awful, so I can understand why you were initially reluctant to try another one but surely it’s now worth trying again?

Could you ask around, friends, relatives, neighbours to see if anyone could recommend a surgeon?

It’s awful that you are having to fight to get the help you most definitely need, but I’m pleased to hear your fighting spirit has returned!

CariadAgain Fri 06-Dec-24 13:57:19

Another voice saying "Your doctor has been negligent - try and see another one". I believe we're legally allowed a second opinion?

As for the attitude of "to be expected at your age" = I don't think so. That's an easy copout for a doctor that can't be bothered. I've had that phrase used at me about an illness (now gone years ago thankfully) and I was only in my 30's at the time!! Must admit I'd be inclined to turn round to any ageist doctor like that and say "Oh - is that why there are people still working and climbing up mountains to do so - in their 90's in other countries (eg Soviet republics, Greek Islands)". If they can do that sort of thing at that age - then how come people get written off healthwise at a much earlier age than that in this country??

Yep...I'd also be considering going off to do a newspaper expose ("Daily Mail" seems as good as any for that) and hammering home the "made to wait in the first place because of Lockdown" point).

Good luck!

OldFrill Fri 06-Dec-24 13:42:14

I haven't responded gentleshores as l haven't anything useful to add. I do wish you all the best, and the strength to persevere.

gentleshores Fri 06-Dec-24 12:59:50

And thank you to everyone for replying. It has made me feel more in fighting mode, not so alone with this, and determined not to be fobbed off.

pascal30 Fri 06-Dec-24 12:59:03

B9exchange

It does sound as though you have an uninterested GP, and that is never good. If you get to see another one, grit your teeth, be pleasant, and say to them 'If I was your mother, what would you recommend to relieve the severe pain?'

It would be worth taking up your case with the local Integrated Care Board, you can find them here www.nhs.uk/nhs-services/find-your-local-integrated-care-board/ and write to your MP, requesting they take an interest in your case. I wish you well and hope you find help soon.

I was going to suggest contacting your local MP.. this sounds like medical neglect

gentleshores Fri 06-Dec-24 12:40:11

Thank you Drina. Yes I thought I would need a Consultant to recommend me for stem cell treatment. I have asked the GP directly at each stage, after jumping through all the hoops and the answer I get is "I can't refer you directly to anyone". My question is why? I've done the self referral to physio (2 years ago) had the assessment (which was go away and take painkillers and keep as active as possible and do the exercises). I got worse. Which was predictable. And another condition now in my upper limbs as a knock on effect. Which was also predictable when not able to bend your knees. I then finally got MRI scans and asked directly for a referral to a Consultant then and was told again - I can't do that. So I asked for a referral to a private Consultant and they can do that! So it's only an NHS consultant they can't refer to.

I wish I could find a good private physio in my area. Did they come to your home? There is one in my area but her treatment rooms are inaccessible!

I think I need to see another private Consultant but am wary of choosing one after the last bad experience.

Drina01 Thu 05-Dec-24 20:44:02

In reply to your question …So I have something called greater trochanteric pain syndrome and have had numerous guided steroid injections to attempt to fix it. It affected my walking, sleeping, tremendous pain, was on crutches and given morphine. This was proving to no avail hence stem cell treatment offered (via nhs which is where the consultant kindly shoved me in the right direction as expensive). Next would come surgery he tells me if that didn’t work. I was only told all this via the Consultant as no one else had any opinions or experiences of the intensity of it. In my opinion (and it’s only from what I’ve observed) if you state a direct request like ‘I want to be referred’ - I being the direct request .. they are more inclined if possible to act ..
very frustrating for you … is there another GP you could request a second opinion from ? As an aside I have spent a fortune on private physios and a wonderful chiropractor to keep me going in between. NHS couldn’t compete with that part.

gentleshores Thu 05-Dec-24 17:12:39

theworriedwell

Where I live, south west, the doctor can't refer you to orthopedics. You have to go through the physio dept and only get a referral if the physio will do it. You self refer to the physio so the GP has nothing to do with any of it.

I think some areas do have that policy - they want everyone to self refer to physio and have an assessment and the physio decides if you need an MRI scan or to see a specialist. I went through that process 2 years ago and the physio decided I didn't need either - just take painkillers and do exercise and keep active - which I did for a year but I didn't fix anything and I got knock on conditions and then got worse. Hence the GP finally sent me for MRI scans - but then said- can't refer to a specialist.

Since when were physios Doctors/Gods who decided your life? I think they're just trying to keep waiting lists down.

silverlining48 Thu 05-Dec-24 16:38:20

We can also self refer to physio here in the south east.
I self referred and saw a physio. After a few sessions she referred me to orthopaedics direct. I saw the consultant and had an mri.

theworriedwell Thu 05-Dec-24 16:32:16

Where I live, south west, the doctor can't refer you to orthopedics. You have to go through the physio dept and only get a referral if the physio will do it. You self refer to the physio so the GP has nothing to do with any of it.

Cossy Thu 05-Dec-24 15:10:12

Iam64

CrazyH I understand knee replacements are more complicated than hips but - 5 friends had knee replacements, all recovered well and now pain free and much better mobility

I also have three friends all recovered/recovering well and walking with no pain at all

Cossy Thu 05-Dec-24 15:07:50

You have my utmost empathy!

I paid to see a private rheumatologist last year, to be told yes, you have widespread osteo-arthritis and fibromyalgia and you just need to learn to deal with the pain!
He suggested meditation and yoga!

Next time I’ll just throw my money straight down the drain!

Please see a different GP and ask for a double time consultation (double appt), and tell them all your issues and that there must be something they can do to help you.

Good luck

gentleshores Thu 05-Dec-24 14:57:10

Thanks but there is only the one practice in my area - we're rural. I could try a different Doctor in the practice but I'm a bit concerned that they might not want to contradict one of their colleagues.

silverlining48 Thu 05-Dec-24 14:53:28

If you have lost confidence in your gp it’s fairly easy to change to another practice. We did it earlier this year. Really straightforward. Approach the new practice and they do the rest,

gentleshores Thu 05-Dec-24 14:30:09

I've just seen this

"You're entitled to ask for a referral for specialist treatment on the NHS.

However, whether you'll get the referral depends on what your GP feels is clinically necessary in your case."

www.nhs.uk/nhs-services/hospitals/referrals-for-specialist-care/

So my GP isn't being honest with me?

gentleshores Thu 05-Dec-24 14:27:48

Thank you all - so I'm being fobbed off and they can refer to specialists and refer out of the area? Drina - when you say the Orthopaedic consultant tried to fix you - do you mean he did some surgery? Why did he think it was stubborn and put you back in the NHS? Where were you offered stem cell treatments? Yes I have been through the GP physio hoop but am still in the same hoop - it doesn't go any further. It's unfortunate that the private Orthopaedic consultant I saw didn't want to do anything - he seemed to see me as making a fuss about nothing and said to do more physio but later he basically said there wasn't anything he could do and said surgery would make it worse (which scared me but I don't believe that and I didn't even get the opportunity to ask about stem cell treatments). It was a very bad appointment and I will never go to one alone again. I did see a private physio earlier in the year but it's hard to find one and she disappeared off the radar before anything happened.

I maybe need to push harder - I'm juggling family life at the same time. OH is still working and Grandson needs input.

Drina01 Thu 05-Dec-24 12:05:44

I have also been in the OP position. I paid for private MRI and had to jump through the GP/physio hoop to then be referred much further down the line. I paid on the back of the mri findings for a private orthopaedic consultant who tried to fix me. Once he realised it was stubborn he jumped me back into the nhs (a wait of months) but have been offered stem cell treatment and an open referral for a year to see if things calm down. I also paid for private physio and chiropractor treatment to keep me upright as this was all progressing (nhs physios only gave me leaflets and no hands on). All in all it’s taken 2 years to get to this point. You have to be stoic and keep plugging away unfortunately.