despair

[Luludean]

After 3 years of not being happy with my Rheumatology department , wonderful PALS listened to me and were so supportive! I was given a new consultant. I had been on Adilumamab and another. I wanted these injections to work but I had repeated UTI’s after each one. 2 years of no medication or face to face.

The new consultant immediately put me on steroids for a month . She had read everything about me ( including cardiac history). 3 days after starting steroids I stopped sleeping , 3 weeks of this turned me

quite crazy / exhausted too. Repeated messages to urgent helpline went unanswered till a podiatrist e mailed them . I got a «  my chart  » message telling me « Insomnia is not on our remit ». I finished the steroid course and my feet, facet joint and hands flared up.

Out of the blue on Tuesday this week a lovely lady phoned from the «  Pain Clinic « . She told me they had no patients on their waiting list . I was offered epidural steroid and facet joint and trigger place injections on Jan 6th24. JOY!!

Wednesday , in the post I got pack of deteils and advice as to which pills to stop before going in . Wednesday afternoon I heard message saying procedure was cancelled.

Today I phoned the same lady who was audibly upset . She said it was all out of her control . From day before, when they had no one waiting , they had now shut all lists . No possible appointments in the future.

If stress causes flare ups I have them !! Now in a lot of pain !!!! And so miserable. I do not have the energy to contact PAL s or local mp

[sylvi]

Wow they have treated you badly darling. Hugs from me. x xxxxx

[Akaka]

That’s unbelievable, I think an explanation should be offered. Maybe they are stopping pain clinics in the hope we all have to go private and it’s another stealth step to reducing the NHS? My rheumatoid podiatrist has retired no replacement after having 2 years of appointments and injections it’s gone silent and I cannot get through on the phone 🤷‍♀️. I think I would try Pals again it might help with the stress?

[Luludean in reply to Akaka]

Thank you Akaka!! I am so so incredibly bolstered by such kind replies ! I was becoming reclusive , ditching friends . You people have made me feel so ashamed of my self pity !!!! WOW !!

[Gnarli in reply to Luludean]

Please don't think of your situation as self pity. You've been horribly let down in being offered the sunlit uplands of reduced pain and enhanced mobility only to be denied with no explanation or likelihood of treatment in the future. I'd be raging

[Luludean in reply to Gnarli]

Gnarli , it was apalling self pity and increasing hatred of everyone!!

Now I can luxuriate in rage on Monday when I compose an e mails to PAL. Wrote once before and they were superb . Thank you. L

[cyberbarn]

Oh my goodness. I can't imagine what must be going on behind the scenes in your NHS Trust for that to happen.

When you feel a little stronger I would contact PALS again because it might be that PALS don't know this has happened.

They may have good reasons for doing this, or they may not, but you need to know why because NHS Trusts are supposed to be transparent!

One possibility is that the Winter Plan has just been published by most trusts. It might be that they have decided to close 'non urgent' departments and redeploy staff. I was in a meeting last week about our winter plan and it was pointed out that pushing non-urgent patients away only turns them into urgent patients later on.

I hope you can recover a little of your energy and drive and let them know that this is not acceptable.

[Luludean in reply to cyberbarn]

Thank you Cyberbarn , I will do what you suggest . Cardiology have always been a good department, now they have stopped seeing me anually but I still trust them . My problem with Rheumatology department has been going on for 3 years. As I have posted before departments need to inter communicate , but here they don’t.

Anyway, please accept my gratitude as expressed in previous replies. L

[katieoxo60]

That is not good news Luludean, I believe pain clinics are being phased out but if that was the case , why did they give you an appointment in the first place merely to cancel it later . Unfortunately this is becoming a normal thing in the NHS of course your first step now should be to contact your GP as any pain treatment has to go via them. I would say not approved but a nice whiskey toddy would help the pain while you plan your next steps and it would help relax you to allow you to think. But due to tablets many patients can't take that sort of relieve. Herbal remedies take months to build up in your system so would not give any immediate relief. The stress of this does not help your pain either. Scream if you want it can work wonders to help you face the next hurdle. talk all you can it distracts from the pain . We all have little things that help us .Best wishes and Good luck you can message me if you want to talk.

[Luludean in reply to katieoxo60]

Thank you Katie , I will!! Got daughter and partner arriving for weekend , there will be lectures!! Just checked I’ve recycled everything into right bins!! And.. hidden clothes I’ve bought. I am so shallow!! All these lovely replies have blotted out a lot of the hopeless feelings!

And. Yes !! Sauvignon blanc does help !!!! L

[katieoxo60 in reply to Luludean]

Thats the idea share a similar taste in wine but I don't drink anymore due to taking opiods. Enjoy rest of day.

[Luludean in reply to katieoxo60]

O!!!! That is not good but , if opiods work , they win .

It is a beautiful day !! L

[katieoxo60 in reply to Luludean]

Did you see all the hoar frost this morning , that's one of the wonders of nature. It was beautiful. Enjoy your weekend I have to do some research and ordering on line today bye for now .K

[Celticdancer]

I`m sorry to hear about your problems with the NHS but it`s certainly becoming alot more common nowadays as I`m reading alot of comments like yours online from NHS patients all over the UK as the NHS slowly and steathily is getting more and more privatised. NHS services are getting removed bit by bit forcing patients to go private and this is happening slowly so people don`t notice too much or by the time they do - it`s too late.

I research and treat my own autoimmune conditions and arthritis using more natural methods and I often watch alot of videos from herbalists like Barbara O`Neill on facebook and youtube who is really good and very knowledgeable about natural non-toxic ways of helping your health and body.

Patients who can`t afford to go private will either have to find ways of helping their health by themselves like I have following more natural methods or suffer in silence as the NHS and government don`t care about you at all. Look up the American comedian George Carlin on who really runs the world and he says repeatedly that governments don`t care about you at all as it`s "one big club and you ain`t in it". Also researchers like David Icke have been very accurate in their predictions in what`s going on as it`s come true. Those who don`t want to wake up and smell the coffee think it`s conspiracy theory but it`s happening before our very eyes. Even music bands like Pink Floyd in their lyrics have mentioned about brainwashing in the education system etc and books like George Orwell`s 1984 foretold the future which is remarkable considering he wrote the book in 1948!

I hope you find relief from your pain somehow. Keep researching and finding different ways to help yourself - I used alot of trial and error and I`m on no medication. There is a youtube channel called debess which has old videos of a researcher called Alan Watt who died a couple of years ago who used to do a radio show and he also interviewed people. He spoke alot about what was happening and what is going to happen and knew there would be a global pandemic well before covid even happened as he grew up very awake and read books in his local library as a child but when he compared what his teachers were teaching him in school and the information in the books he was reading did not tally up he knew something was wrong so started delving deeper into many different topics.

These topics are not pleasant to read and hear about but you along with everyone else on the planet has a right to know what`s going on.

[Luludean]

Thank you celtic dancer for your lengthy surmising of my problem and the nhs in general . I have never read any of the people podcasts you mention . I have ofcourse read a great deal of books on dystopias and am awaiting the next biblical plague! 😱😱

I have had open heart surgery on the nhs and would never go privately for any cardiology other than my yearly trip to see the surgeon who saved my life. It is not an ethical decision , it is simply based on my experience and the fact that so many private patients get rushed into nhs A and E after being operated on in these private establishments . Thereby clogging up an nhs already under valued and underfinanced . As to alternative treatments and herbal remedies , those on heart medication have to be fully aware of the pitfalls and drug/ potion interactions.

My trivial ( not to me but , in the scheme of things) disappointing treatment is due to a badly run unhappy department . My recent experiences in several other departments have been of amazing , efficiency , intelligence and most importantly , kindness! L