Disappointment - the ultimate reality for OA?

crinkly

Hello.

I've been a forum follower for many years and have always posted with positive intentions of encouraging others. Recently that approach has become more difficult to maintain and I have made only occasional contributions here, being aware of the depressing effects of reading online wingeing and the apparent reduction in NHS support for people living with OA.

My most recent personal experience has driven me to accept that, except in dire emergency, (I had excellent care for an essential RTSR in 2019) there is a lack of effective help for living with OA.

My 30+ years with widespread OA find me now with extremely limited mobilty thanks to knees that are frankly past their sell-by date added to the findings of a lumbar spine MRI, which states

'L4/5 disc - osteophyte complex with impairment, spinal canal stenosis'.

It didn't need the scan to inform me of stenosis but the osteophyte impingement is a new addition to the bulging thoracic disc identified many years ago. ...and this is before I admit to neck symptoms. What might be visible if the rest of my spine were scanned can only be surmised and I struggle with physical restrictions and significant pain.

On receipt of this information my GP referred me to a spinal surgeon but I will not get to see a Consultant because I have been weeded out by a preliminary physiotherapy assessment. This was thorough and the outcome concluded that changes shown on the MRI are due to normal ageing while the pain level is a result of having become trapped in a cycle of pain that does not relate to anything seen on the scan. I'm told there is no risk of things worsening and I am to walk along the pavement for two minutes twice daily, gradually iuncreasing the time until pain-free mobility is restored. I should also enrol with local leisure centre classes especially Aquarobics and Yoga. I agreed to referral to a Pain Clinic on grounds that there may be helpful new strategies since my initial Pain Management Programme of nearly 30 years ago and I will soon undergo a preliminary telephone assessment for suitability. Other than that I was told there is no need for any follow-up and no suggestions were offered for relieving specific symptoms.

Cynicism is not one of my traits but I cannot supress the feeling that I have been fobbed off time and again. The consistent hard work of staying as mobile as possible has been disregarded and I've been sterotyped as an older woman (late 70s) who is a self-imposed lazy-bones with no knowledge of her own body and the ways its functions are changing. In a nutshell - of no economic value, of little use to society so increasing symptoms can be ignored unless/until the frequent bouts of sciatica become permanent or another specific emergency arises.

I find this demeaning and disrespectful; actually taking no account of my willingness to continue taking personal responsibility for my own wellbeing, with informed support. I am made to feel like a time-waster. If an honest acknowledgement were made of the likely reality that the NHS can no longer support a non-life-threatening chronic condition then at least I'd know exactly where I stand - more or less in the same spot where I've stood for the full 30 years of my OA journey!

I assure you that my brain and body have not been left to atrophy - I 've made massive adaptations in lifestyle, gained an MA degree at age 73, volunteer with a national charity that supports people who contemplate suicide, am a Lay Preacher in a non-conformist denomination, spend as much time outdoors as possible, including cycling on old railway tracks and have every reason to be motivated to stay active for husband, adult children and seven grandchildren.

Yet is seems there is no encouragement for folk like me and next to nothing I can pass on through this forum to help others cope with the limitations and progression of OA. It's definitely a DIY condition and I recall the posts of the indomitable late Mike on these threads - especially on 'Val's Cafe'! Thankfully I have a great family around me.

Any comments or suggests will be welcomed but please don't reply via a link to VA's mine of information - I have been there and can easily access it again for myself, thank you!

jonr

Hello @crinkly,

I share your frustration having recently experienced this same sort of slopy-shouldered response as you have.

I have OA in both knees, been suffering about 2 years, formally diagnosed last Summer at age 55. I feel I'm doing my bit by taking both prescribed drugs, supplements, following a healthy diet, keeping my weight down and exercising as much as possible but the NHS don't seem to want to take action as month by month my condition has steadily deteriorated.

On a phone call with a doctor on Connect Health I was asked what my expectations were from the call, I said I hoped to be referred to a consultant for ongoing treatment, possibly surgery. After spending over 40 minutes answering his questions I was told that because my condition isn't chronic then there would be no referral.

I said I was very disappointed. I believe prevention is better than cure, I'm in pain 24x7 and my reduced mobility is having an impact on my mental health. I don't believe it should take for my to be virtually paralysed before the NHS sees fit to refer me for treatment. He said he was only following guidance so I told him I was not happy and would seek a second opinion from someone more senior. I called back, made an appointment with a senior doctor who totally agreed with my point of view and bingo - I had my referral to a consultant in less than a week.

The Doctor who referred me and the consultant said that oftentimes doctors have different approaches and XRays and MRIs don't necessarily give an indication of the pain a patient is experiencing so in your case (and in the case of many others here), it might be worth calling back to say you're not satisfied with the outcome and wish to have a second opinion, ideally with someone more senior. It seems one has to complain to get someone to listen but hey ho - I've paid hundreds of thousands of pounds in tax and NI over the years so when I need to call on the service for treatment I won't give up without a fight.

Good luck - I hope you get the answers and the action you need.

Jon

frogmorton

Oh @crinkly

You probably don't want to hear this but your post had me in tears.

The person I know you as is the one you describe. She is a busy, motivated, active and supportive person.

It's dreadful it really is to hear you being made to feel like this: ".... sterotyped as an older woman (late 70s) who is a self-imposed lazy-bones with no knowledge of her own body and the ways its functions...." Feeling like "...of no economic value, of little use to society so increasing symptoms can be ignored unless/until the frequent bouts of sciatica become permanent or another specific emergency arises."

I am horrified. Really so upset.

The worst of it is I know you are not alone in feeling like this, but not everyone has the ability to express your frustrations and experience so well. So many just go away feeling rubbish unable to voice their pain and suffering. Many put up and shut up. Mike never did that. I miss him very much.

I hope you aren't planning to leave this community though?

Will have to leave it at that and just hope you know everyone here, particularly those you have helped over the years, does value you. Hugely.

Take care

Toni x

helpline_team

Hi@crinkly

Thank you for posting and you've clearly touched a chord (in me as well as the people who've kindly replied).

You don't want the kind of information links we would normally use, so instead I'm going to suggest options to mull over.

Let me throw out some ideas (but please ignore those that don't appeal).

Because you feel you were weeded out by the Physiotherapist at the MSK triage I'm wondering if you might want to prepare for another MSK assessment by working with a Physio for a few sessions? The quick way to prepare might be to find a Physio through the Chartered Society for Physiotherapy (specialism arthritis). My instinct would be to tell the physio exactly what you want to do. After a couple of sessions with the physio, you might then ask the GP to re-refer to the physios at the MSK and try them again.

My hope is that you might get past an assessment better if you can demonstrate your daily self-management exercise routine, show any progress you've achieved with healthy eating and weight control, but still stick to your guns about your daily functional problems and desire to have the opinion of a surgeon. Being persistent may be helpful - but time spent with the Physio my help prepare you for those conversations.

Finally there may be the option of using some savings to see a surgeon privately and have them write their recommendations to your GP, which may strengthen your hand at having a referral to a surgeon on the NHS. But before considering spending rainy day money, are there sufficient, recent, good quality images of your spine in your medical notes? My point here is you want to avoid paying for a new image if that could have been done by the GP.

I do hope some of these ideas may be helpful - and do disregard any that don't feel right for you.

Guy - Helpline Team

crinkly

Thank you Jonr, Toni and Guy. I've had time to reflect on recent experience, deal with its most depressing aspects and will try to address your kind comments here.

1 I have no intention of 'leaving' the VA community. It is full of information and good advice so I don't reject it in any way. Sadly members' posts seem increasingly negative: I totally understand that OA is a minor relative of the arthritis family but I find it hard to offer positive suggestions to others with OA when I am struggling and have never had much NHS support. I've accepted control of my situation but am now feeling low on personal resources.

2 My request not to be answered by the usual links to VA material was not because I reject it. On the contrary in more than 30 years with OA I have accessed - and found extremely helpful - much relevant information on the VA site so would find it galling to be sent back to articles with which I am already conversant. Yes, I regularly keep myself up to date with progress in treatments and increased understanding of the condition.

3 I was given the opportunity to provide feedback after my appointment via a mobile phone app. I have only a very basic mobile that does not allow me to do this but I guess I could search for another way of contacting the relevant hospital department. Might be able to do something via the GP who was concerned enough to make the referral - if I can get past the receptionists who are reluctant to arrange anything other than telephone appointments with a nurse.

4 I am considering options for private specialist physiotherapy etc now the door for NHS physio has been closed.

5 The possibility of a private consultation had occurred to me but I face an ethical dilemma in doing so . I could not afford self-funded surgery so someone on a lengthy waiting list and without the means to queue-jump in this way could have their hope of relief delayed even further by my action. I have good family support and coping skills so would be devastated if I caused another patient greater physical and psychological pain than they are already battling. (I know two people who have recently followed this route in 2023 and had successful surgery for spinal stenosis that would otherwise have incurred a long wait accompanied by serious deterioration.)

So my thanks to you all for providing food for thought. ☺️

stickywicket

Hello @crinkly1 , and my apologies for not posting before now. Your original post worried me as it did not seem in keeping with the upbeat, getting-on-with-things Crinkly we know and love. I realised you must be very down and required a better thought-out reply than I could manage with the kerfuffle of Mr SW being away, my sister being here, my birthday arriving and B.A. being such wassocks with their 3hr flight delay that Mr SW, who is almost 80 and has heart failure, was destined to be deposited in Glasgow (nearly 100 miles away) at midnight until our son took over negotiations. Sorry, that was my ‘ranty’ explanation.

I’ll jump straight to your latest post and Point Number 3. Yes, do try the GPs. Mine have always (both England and Scotland) been great in such circumstances. Be politely firm with any receptionist and, if they insist on a nurse, well ours are great and often provide the quickest access to a GP as they call a GP in if they feel it necessary. Even a phone appt. is a route to this. If all else fails, why not a (again polite but firm) letter to either the GP or practice manager with a copy to the other. I know that you can do this but I also know that, when our resources are low, we seriously doubt ourselves. Final resource – PALS.

4. Since we moved here we’ve always used an excellent private local physio. They don’t charge the earth. About £35 for a first appt. which lasts about an hour and least half of which consists of listening and noting very carefully. They then give you exercises, watch you do them and type out your own exercise programme. I’ve never needed a follow up visit as the exercises given are great.

5. I do understand, and share, your feelings about a private consultation. Really. But. The NHS is a different beast now to the one we used to know. I think, within the dire straits of the NHS, it’s often those who shout loudest who get the attention not those in most need. You can’t assume that you’d be taking the place of someone in more need. You might just be taking the place of a loudmouth😉 Yes, I’m being facetious but, as you know to your cost, scans don’t tell the full story and can be, and are, sometimes misinterpreted. We are all capable of human error. (Can you ask for someone else to look at your scan?)

I think, with arthritis, we all know that our best lives are gained by our own attitudes to exercise, diet, lifestyle etc, and you have exemplified this. There does, of course, come a time when we have to accept that age and even more nfirmity is coming somewhat faster than with our friends. But we can still give it a fair crack of the whip. And I’ve no doubt you can do this.

crinkly

Thank you all and apologies for worrying those who know only my positive side! I'm just a tad unlucky that my version of OA is widespread so all joints are reaching the end of the road simultaneously.

I have nothing but praise for the NHS in emergency/urgent care scenarios but routine matters are a completelty different proposition given the current state of the service. MSK departments have exceptionally long queues including large numbers needing joint replacements as we know from members of this site.

I am now in possession of a copy of my recent MRI report which states clearly that there is spinal stenosis and osteophytes causing bilateral impingement of nerve roots at L4/5 plus a chronic compression fracture at T12/L1. I hope to obtain copies of the scan images in the next few days.

The physiotherapist I saw chose not to mention either of these changes but told me only of others that are noted as consistent with ageing and causing no visible impingement. The increased walking and Yoga I was urged to do might well be OK for the latter but are not going to improve the pain of nerve impingement that occurs with weight-bearing!

I'm sure that I know when the fracture occurred and have researched it's presentation to learn that it typically results in an area of permanent tenderness that is easily aggravated. (It can be very difficult to identify such a minor fracture without a scan. I had a single x-ray in a very busy A&E department.)

Maybe you can understand, then, why I am not exactly full of enthusiasm for the NHS but I am planning a private consultation with a professional who will be shown a copy of the MRI images and report then will hopefully give an honest appraisal and perhaps point towards measures for preventing further damage and discomfort. I hope they will also take into consideration the additional problems I am experiencing in neck and thoracic spine since the NHS can only consider those under separate referrals.

So I am following up on some of your kind suggestions and may even end up thankful for the NHS's hiccups if I discover an effective alternative to surgery. Thank you again.

Yes, I know I am lucky to have some savings, a strong voice and an informed brain. How on earth do the vast majority of OA patients access any sort of help? No wonder the mental health services are also overwhelmed at present!

stickywicket

Crinkly, I'm very pleased indeed that you have sorted out a Plan B which will give you grounds for hope. My own hope is that it yields some good results. Please keep us informed.

helpline_team

Hi @crinkly1

Thanks for letting us know your thoughts and keeping us in the loop.

Here at the Helpline we don't need you to put on a cheerful tone. If you need to tell it like it is that's absolutely fine.

Who knows but, you may still consider a future re-try to get through the MSK Pathway and see an NHS Orthopaedic back specialist, it's just that if you've had a recent failed attempt you might find you can incorporate the approach/ideas of a physio you choose yourself, to see if that can help you move forwards. Any physio you see can write a report on your work together, (and they might choose to quote the MRI report, which would be hard to be argued with, seeing as it was done by the NHS).

When we offer you ideas, we don't know exactly what has happened already. So as always you may listen or disregard following your own common sense and instincts.

I feel that people within the Helpline and within the Online Community are wanting to wish you well and sending a lot of electronic hugs and kind thoughts.

All the best

Guy - Helpline Team

crinkly

Conclusion

Thanks to all who have given encouraging comments and suggestions. More than 30 years with OA have seen me journeying down most available routes to retaining independence and being sufficiently clear-headed to make a contribution to the well-being of others.

Plan B produced what I believe was an honest response as the practitioner concluded that the particular treatment offered would not be advisable in my case. With a substantial fee under consideration I felt that the two telephone consultations made to me and the informed explanation given, with empathy and without any charge at all, were both generous and genuine. An excellent advert for oft-rejected alternative therapiy practitioners of which I have been frequently sceptical!

Consequently I am back to square one and conclude that self-management of OA is about as good as it gets. While my best wishes go with anyone who has obtained appointments with MSK consultants and been placed on surgical waiting lists or offered other treatments, I accept that I am not eligible for support now but will receive whatever help is required in the event of my symptoms reaching emergency levels. That is good to know.

For the record, the physiotherapist I mentioned was carrying out assessments on behalf of a spinal surgeon and offered me no on-going NHS support but advised participation, alongside younger and able-bodied people, in local leisure centre activities. Having been there and done that (with benefit) in the past I am fully aware that I could not now match the pace of these classes. Outome - frustration for the Coach, other participants and myself so not psychologically helpful for anyone.

Most statutory services and many voluntary ones are overwhelmed with demands, desperate for adequate funding and, I believe, face a very uncertain future. What those of us with OA can expect is undoubtedly limited despite big steps forward in the development of effective ways to improve quality of life so I can only refer back to the heading of this thread.

Disappointment - along with stubborn hope is my appraisal of the situation. Those of us who will not live long enough to see major changes can only support Versus Arthritis and all who are constantly campaigning for a brighter future for paople who struggle with restricting conditions that threaten quality of life but are not life-threatening. We don't want to be a burden on family, friends or society so must strive for the means to sustain independence and live reasonably comfortable lives. As I move creakily towards my 80th year there is little mileage in fighting for myself but I can, from a position of long personal experience of life with widespread OA, continue the battle on behalf of others. 🤩

CarylW

Hello @crinkly

Thank you for letting us know about your recent experience on Plan B. I am very pleased that you got an honest response from the alternative therapist: it's good to hear. It's also good to hear that you are still appraising the situation with hope, even if stubbornly! I think a lot of us on here can resonate with your views in the last paragraph. Independence for as long as possible and living comfortably is really important to all of us, and it's good if we can use our experience to help others.

Do keep in touch - your posts are so often positive and inspirational.

Best wishes

Caryl

Bettyboo22

Hi @crinkly

Thanks for sharing your plan B outcomes, unfortunately self management and NSAIDs do seem to be the main treatment for OA, sorry to hear the physio didn't work out for you.

I wondered if you'd be interested in contacting Freehab. they provide free consultations and rehabilitation to people with MSK conditions. It is completely free of charge they do ask for a voluntary donation but it's optional.

I'm sure your family and friends do not think of you as a burden.

Take care and please know you are not alone

@Bettyboo22

helpline_team

Hi @crinkly1

Thank you for sharing your plan B with us, we are sorry things haven't worked out as you had hoped for in the past.

As @Bettyboo22 has said with most forms of arthritis it is down to self-management, eating healthy, keeping a healthy weight and trying to keep active, with exercise like, walking swimming and structured exercises. And yes painkillers can help and also NSAID's can too but not everyone can take these so we often suggest people talk to their GP about capsaicin cream which is a drug free treatment recommend for OA, when applied in a form of a cream, capsaicin is thought to provide pain relief by temporarily changing the way our body process pain. I have added the link below with more information. I have mentioned this because everyone has offered great support with your situation but didn't notice things to help with the pain.

Reading through your notes it is very clear that all you want is help with your pain because being in pain all the time isn't nice, so YOU are not a time-waster, also you are not alone we are here to support you whenever you require it.

https://www.versusarthritis.org/about-arthritis/managing-symptoms/emotional-wellbeing/

https://www.versusarthritis.org/about-arthritis/complementary-and-alternative-treatments/types-of-complementary-treatments/capsaicin/

Please take care.

Chris

Helpline Advisor

crinkly

My thanks for further suggestions. I appreciate your efforts to help.

Reading today's VA Newsletter with its review of waiting times for surgery was interesting as even six months off an anticipated two years of pain and immobility must be welcomed. I am pleased for all who have been given hope!

What was not mentioned is the difficulty of getting as far as being added to a waiting list!!!! That is my current issue as I know for certain that, pre-pandemic, my MRI would have been sufficient to indicate that the only way to achive improvement and prevent worsening is via spinal surgery. Knowledgable GPs must be as frustrated by the outcome of referrals as are their patients.

I rest my case............

helpline_team

Hi @crinkly1

Thank you for your reply, it is just a suggestion but have you been referred to see an Orthopaedic specialist who may be able to get you onto a waiting list.  

Just a thought hope that's ok and hope it helps.

Find Orthopaedics services - NHS (www.nhs.uk)

Best wishes.

Chris

Helpline Advisor

crinkly

Thank you Chris and others. It seems you didn't quite understand my original post.

To summarise: I was referred 'urgently' to a spinal surgeon (one speciality of orthopaedics/MSK). I was given a preliminary assessment 5 months later by a Physiotherapist from that surgeon's Team, who deemed it unnecessary for me to be seen by the surgeon. So absolutely no chance of being placed on a waiting list. Instead I was given clear information about reporting to A & E if things deteriorate further.

For the first time in my 30+ years with widespread OA I feel that it is beating me and found myself reacting negatively to the well-meant suggestions of others which, at best, seemed placebos, at worst patronising. I imagined that sharing my thoughts and observations here might help but wasn't really looking for practical solutions.

That the NHS has the ever-increasing knowledge and skill to improve quality of life doesn't come with the financial and human resources for delivery, which absolutely must be directed first to saving and preserving life itself. Perhaps we are caught up in the prelude to a major turning point in national attitudes and access to health care, education, social care - all the services we have taken for granted. Where will OA fit into that scenario beside so very many utterly deserving life-threatening conditions? How much control will we have over our own destiny? There comes a time when rhetorical questions and searching for solutions are unhelpful. Ultimately we need to be given the tools for being realistic in our expectations so we live one day at a time, acknowledging our restrictions yet making each the best day possible as a precious gift.

I hope some of what I've posted via VA's online community over the years is helpful and I will never give up on Self-management as the best way of dealing with the 'bad stuff' of OA. I just hope I can keep it's progression under sufficient control so it remains in proper proportion to all the very 'good stuff' of life and that I don't end up a grumpy old wife/mother/grandmother/neighbour/friend/woman.

Yor responses here have helped me reach a deeper degree of acceptance of my personal reality, for which I am grateful. But no more helpful ideas please as I have no intention of adding anything more to this thread!