New plans for arthritis sufferers

[giropaul]

So, the newly released plan is to remove pain relief, get people to lose weight and encourage exercise.
That, personally, worries me a great deal. Particularly because the image portrayed is of some gentle rambling with walking poles.
I have severe arthritis in both shoulder, and of the lower spine.
The advice from several hospital Consultants over the years has been that, especially given that I am a long term, keen, and committed cyclist, operating would not be their option, and they advised pain management to allow me to cycle ( with its attendant weight management, social and mental health etc benefits).
Without pain relief riding a bike would be impossible.
I’m hoping that my GP will continue to treat me as an individual, and understand my situation. So far they have, but the Practice has been taken over, and my cyclist doctor has gone.
If this initiative does become the requirement, I can see myself sitting watching daytime tv, trying not to see the huge amount of cycling paraphernalia I’ve assembled.
Buried in the press release are statements about how much the NHS would save by not operating or prescribing pain relief. Cynical- me?

[yoav]

The reality, as usual, is more complicated than the headlines suggest.

Analgesics and anti-inflammatory drugs for osteoarthritis aren’t going anywhere. There is also nothing new in advice to lose weight and increases exercise as a way to manage pain. What has become more apparent is that drugs for pain don’t really work all that well so the emphasis should be on non-drug measures.

I spent many years as a pain clinic doctor so all this is not news to me, it has been known for a long time but bodies like NICE as well as medical managers and the general public have been very resistant to this message as everyone like the idea of a quick fix to their pain rather than go through the slow, tedious process of self-management, which many patients regard as being fobbed off rather than getting helpful advice.

Successful pain management is about using medicines (and medical procedures) judiciously alongside education and support for patients to help themselves. But that costs time and money which governments are reluctant to spend.

[ElyDave]

Costs time and  money, and GPs with more than 5 mins per appointment to actually understand those needs, as you say, its complicated.

[chrisbainbridge]

I have a colleague who refuses to operate on people until he sees real ownership of the management of the pain, successful counselling for patients with anxiety, depression and catastrophic thinking. He essentially never prescribes more than paracetamol even postop as patients understand the pain and what it means.
When he does operate his results are impressive.  BUT he operates on insured patients in the US and costs a lot of money.

I would agree with YOAV that we do not have any drugs which really treat arthritis pain. Painkillers in my experience work on chronic constant pain but arthritis pain is intermittent, catches one out on use. The best treatment is denervation in the hand and wrist. Simply stopping the pain messages getting through.

[yoav]

I spent many years trying to keep chronic pain patients away from surgeons!

[barakta]

Most surgeons run a mile if you ask them about pain... I've had a few good exceptions who couldn't "fix it" but explained what the anatomy was doing, what the arthritis was now doing and were happy to document that it was real so I could access adjustments/support.

NICE did not handle this well and disabled people often don't trust NICE because they had to be SUED before they consulted disabled people about the Clinical Frailty Score at the start of the pandemic and they don't consult disabled experts with lived experience of pain. It's very annoying as someone who lives with arthritic pain to deal with medics who sometimes don't seem to understand what that's like at all!

I also happen to react horribly to many NSAIDs, gabapentin and paracetamol which all give me hideous migraines! I tried a denervation for the shoulder but that was a hideous painful disaster and the pain service discharged me with a "get GP to try gabapentin" as soon as that was apparent while claiming not to discharge me... They'd run out of options.

I have to make do with lifestyle adaptations which I don't think are discussed enough. I have an ergonomic desk which changes height, an ergo chair and 3 different 'mice' devices to spread the load differently as I use a computer for 2.5 jobs and hanging out online in places like this. I only get those because I have *excellent* documentation of my physical impairments and know how the game(s) work to get things. I have a similar setup at work when I can walk enough to get back to the office which I had to navigate an undocumented system to get (I rapidly escalated to legally tetchy because I no longer mess about, but most people get demoralised and distress and give up). I also do things like use a straw in my drinks which reduced my arthritic/displastic elbow and wrist pain by about 70% as with my original missing anatomy and now arthritis they don't like that rotational movement. I avoid using a full C hand grip because that's rapidly painful and fatiguing.

To get adjustments at university/work/other you need PROOF and most people don't know to ASK the doctor to document the impact, effects, duration and recommendations around adjustments. I don't find OTs especially good for my difficulties but I think most people would benefit from OT input to manage things that are very painful. A friend got a private OT to help redesign her kitchen so she had minimal bending/reaching (which as a short person with arthritis wasn't easy) but she got lots of clever stuff and it's made a huge difference to her life.

I work with disabled students, some who have chronic pain/arthritis and we need Equality Act suitable evidence before they can get support from the university or Disabled Students' Allowances (DSA) which can fund things like dictation software or decent ergonomic furniture. Employers are often incredibly shitty to staff who develop arthritis while working and a high % of disabled people become unemployed which makes them poor(er). If you want workplace funded support via Access to Work there's a 4 month backlog on applications - many employers would have sacked someone by then, and it's common for employers to refuse to pay their share of recommended costs and employees don't know their legal rights or how to get a lawyer (join a union damnit!). So a lot of people with arthritis have been pushed into poverty which with current costs of living is not hard!

Students are often poor (especially at my university, where 45% of them are lowest 10% economically in the country) so it is very frustrating when they get helpful medics recommending swimming, gentle gym work, or hydrotherapy cos they can't afford the £40-100+ a month that can cost cos student loans didn't keep up with cost of living over the last 25yrs (esp student rent which is now monstrous). I would like to voucher systems for costs or financial support for people who are recommended to do certain things that cost money.

Disability benefits are HARD to get and I understand a lot of medics don't want to "label someone" as disabled cos of beliefs they'll self-define as sick, but there are benefits for people IN work. BUT the criteria are weird and the level can be very high so you can have legitimate need but still not meet the threshold. The DWP are dishonest and will try and trick people out of things. Not everyone has 5 doctors, 2 physios, an OT, audiologist and a specialist nurse worth of written evidence and the ability to write for the tribunal which scared the DWP into not fucking with me (Crapita tried, they tried to say I had no evidence of hearing difficulties despite using a palantypist and a hearing aid!).

I guess my feeling is that this issue is bigger than just pain meds, it's about life and living, and we need to make sure if people's meds are changed or stopped that there is opportunity for proper exploration of their issues and not just a change of prescription or a refusal of a normal repeat prescription which I have seen people have done to them because of this and other changes.

It would also be helpful if people didn't have to wait 6-12+ months to SEE pain management services because by that time they're well into struggling with pain. If there was better support earlier that would probably help.

[Butterfly]

In addition to all that, it's no good telling someone to swim/do yoga/walk/cycle if they have a family to look after and 3 jobs. I cycle and leave clarion with Nye, but I feel mean doing it as much as I do, let alone doing more. I can't afford a gym or regular classes, in time or money, so just giving gym memberships doesn't solve the problem.

[TimC]

I have severe secondary arthritis in my right ankle and foot, following a big motorcycle crash 36 years ago. I was warned at the time that it would become arthritic, but that maybe surgical and pain-relief techniques could have improved by the time it became a real problem. I decided to seek advice a few years ago when a morning of gardening would result in 36 hours off my feet! I was told that cortisone injections might give temporary relief (up to six months) but that the only guaranteed technique of pain relief was amputation. He wasn't joking.

Three years later, I'm still waiting for a cortisone injection. I now walk with a stick in the afternoon or evening. It does nothing for the pain, but it gives me something to hang on to when I have to take a break from movement, and allows me to threaten those who think it's funny with Severe Admonishment. Fortunately, it doesn't yet prevent me from cycling, but getting into a cafe on a longer ride can be somewhat trying. Amputation is beginning to feel like a potential option eventually.

[barakta]

Exactly.

I've seen some interesting discussions about this by #MedTwitter where you get people with lived experience and medics talking together - sometimes even constructively.

Butterfly nails several other points about people having to work, raise a family and not having support. If we said "we can offer you low-cost access to X with a creche for children" or "we can offer you some £ towards a support worker to help with childcare" or "£ to help you need to work fewer hours and focus on health or pay money for things that save time" all those would help.

I don't think people who haven't had pain have any idea what it takes to "push through" and that for some of us, that doesn't even work. I was told by both shoulder and arm surgeons that physio is useless for my arthritis - possibly cos of the underlying anatomical differences that led to be developing arthritis before I turned 40!

Tim, a stick is great. Like you, I'm at the point where my stick is more annoying than not with the hip, but it does help when around others as it alerts them that I'm not great on my feet. I found using it for the hip in 2018 actually helped my appalling balance by giving me tactile data and made people give me a little bit more time/space to get in/out of trains etc which is all I really need. I'll probably keep using it for balance reasons even if walking wise it's annoying. You might want to look into smart crutches and see if they help you at all.

[TimC]

Oh, I have no idea what smart crutches are! Sounds fun.. I have some regular crutches (bought off Amazon) from when I sprained the other ankle four years ago. After some modifications, they are sparkly and have flashing LEDs all over them, which at least causes some amusement.

I haven't been using a stick for long, but I totally get what you mean about it signalling to other people that I might not be too good on my feet at times. I haven't yet used it to arrive at the gym, but I'm anticipating some consternation when I do!