ANGRY: Im so angry apart from covid keeping me... - NRAS

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ANGRY

Pasjc profile image
27 Replies

Im so angry apart from covid keeping me housebound my extremely painful knee is stopping me going out. My rhuemy referred me to physio just before lockdown they told me I needed 4 weeks knee therapy in their knee clinic if that doesn't help it will need replacing. Due to covid that physio didn't happen. I rang them last week they organised a telephone appointment for last Wednesday. They had landline and mobile number I received no call. I've tried a few times i can't get through. Today I received a letter from them saying I'd missed the appointment they have removed me from their list and wrote to my gp saying I will need a new referral. This will take months and it wasn't the gp who refered me it was rheumatologist. I'm so upset I can't walk more than a few steps without help its much much worse since lockdown probably due to inactivity I'm so worried that permanent damage is being done as the pain is chronic down the back of my leg. I'm sorry for the lengthy rant x

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Pasjc profile image
Pasjc
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27 Replies
springcross profile image
springcross

That's disgraceful. You need to contact your GP and tell him/her that you were given an appointment andt that you waited for their call but it never came. Maybe they rang a wrong digit or something. I hope you get seen soon. x

Pippy25 profile image
Pippy25

That is not acceptable and as springcross says you need to contact and explain this to them. I have heard of similar experiences happening to others regarding podietry appointments, when no call was received or because in one case because the person couldn't get to the phone in time, they were deemed as not requiring the service. I hope you get this sorted soon, Take care

Pasjc profile image
Pasjc in reply to Pippy25

Thank you so much xx

Lolabridge profile image
Lolabridge

Do reply to the letter and say you were ready for the call but never received it and are still waiting!

Just a thought. Have you blocked calls from withheld numbers on your phone?

Pasjc profile image
Pasjc in reply to Lolabridge

Oh dear ive installed True Caller I was getting thst many strange calls ill check it out but it does usually let me know its blocked a call. I'll investigate right away

Thank you xx

Pasjc profile image
Pasjc in reply to Lolabridge

My husbands just checked true caller and thankfully it hasn't blocked them it blocks spam from Abroad. Phew what a relief xxxx

I have had a similar thing happen to me. I am in severe pain in my lower back and top of my legs and can only walk a few steps and am in a wheelchair. I had an MRI just before Lockdown which showed I have misalignment of the spine and three prolapsed disks. My GP referred me to a spinal consultant as urgent. Eventually I was told that I would receive a telephone consultation with him ringing me in early May, at midday. I sat here with both my mobile and my landline phone and was all prepared in every way. He didn't ring and after an hour and a half, I contacted the hospital to been confronted with receptionists who seemed to know nothing about it and wouldn't or couldn't give me a phone number to speak to his secretary. For the following two days I was ringing lots of places to find out what had happened. In the end I was told that he didn't have access to my MRI scans (from a different health authority) so he didn't think it was worth ringing. He left no messages for anyone to get in touch with me.

I rang my GP about it and he was appalled and said that the MRI scans were all there and should be on his computer. He said he would get in touch with them. I was eventually given a promise that I would be the first in line for a call when he was working at that hospital again, but that he didn't do many days there.

I have now received a letter to tell me that I can go in for a face to face consultation on this coming Friday. What a long wait from when he was supposed to ring me in early May!

You need to ring your rheumy and your GP to tell them what has happened. It seems to me that we have all been left to fight our own battles to ensure that things get done over health problems. I hate to think what happens to old or demented people, I suppose they just slip through the net.

I hope things work out for you Pasjc. Good luck.

Mickymoo profile image
Mickymoo

This happened to me on 2 occasions with 2 different appointments. Try get through to the physio as soon as u can and tell them about the letter you received, but u didnt get an appointment to start with. They should give u another appointment straight away.

Pasjc profile image
Pasjc in reply to Mickymoo

Thank you ill be calling them first thing Monday xx

Mumcon profile image
Mumcon

I know how you feel😞x

Lizzie3 profile image
Lizzie3

I had a similar experience. Due to start physio and then was cancelled because of covid. Rang my rheumo nurse and had telephone consultation with the consultant who put me on steroids which I am tapering down. My knee is so much better. I am able to walk finally. I know steroids have side effects but I need to be mobile as I live alone. Have not left my house since before the lockdown but am managing. I hope you find something that will help and try to keep active. I also believe that being inactive makes the condition worse. I found some free Qigong lessons online which are very gentle and are helping to keep me form seizing up. All the very best. I feel your pain xx

Pasjc profile image
Pasjc in reply to Lizzie3

Thanks thst sounds interesting ill look for those exercises xx

Lizzie3 profile image
Lizzie3 in reply to Pasjc

Hi, take a look at you tube for Janice Tucker who teaches qigong. She is also on facebook. Good luck- we need all the help we can get.

Jeanne profile image
Jeanne in reply to Lizzie3

Hi Lizzie 3,

After lifting I had lower back pain for a couple of weeks and then my knee pain from several years ago came back. A few years ago I had an MRI which showed I had a meniscus tear. I could not lift the leg and a steroid injection helped me lift the leg. The knee has been swollen for the 6 years of my RA but I could walk outside a little most of the time. Two weeks ago an osteopath gave me a few exercises and I was able to walk outside but probably walked too far. I went back to square one.

You mention you are on steroids and please could you say how much you are on?

Do you know at what stage they decide on a knee replacement? They said a few years ago because I have RA I couldn't be offered an arthrosocopy.

Hope your knee gets better soon.

Best wishes,

Jeanne

Pasjc profile image
Pasjc in reply to Jeanne

I had arthroscopicy on both knees over 10 years ago I believe policy is not to do anymore arthroscopies as they make the knee worse in the long run. I'm on 5mg of steroids after reducing ive been on them for 5 years i just can't get off them. I have RA im on biologics for that. my knee got worse about 3 years ago ive had physio and injections its now so bad the whole leg is very painful especially the back below the knee I was hoping this new knee clinic might give me a couple of more years before surgery. I didn't have RA when I had the arthroscopies lets hope we both get sorted xxx

Lizzie3 profile image
Lizzie3 in reply to Jeanne

Hi Jeanne, I have had a steroid injection and drainage of the knee which helped for a while. I still have not had a scan but my physio said that it was osteoarthritis not rheumatoid. I don't know how they can tell without scans. He gave me exercises but to be honest I had more pain afterwards.

My consultant put me on Prednisolone starting at 20mg for a week, then 15, then 10 and down to 5. It might be worth a try while we wait for scans and appointments.

I was in agony beforehand and unable to walk. I am trying not to overdo it now that I am better.

I hope all goes well for you because it is so depressing to be in pain all the time.

All the very best and let me know how you get on xx

I'm so sorry this happened to you! Its the most frustrating thing ever, i had the same thing happen with gastroenterology referral, there an appointment was moved to a phone call at the beginning of lockdown and they never called, i got a letter saying they assumed I didn't need it anymore and I would have to be referred again, and the problems I have been having put in A&E twice and also admitted to hospital twice... but my GP referred me again as an emergency and 2 weeks ago and I have appointment next week. As its effecting you so much I would ask for an emergency referral from your GP which will put you at the top of the list for the help you need. I really hope you get the help you need soon x

Pasjc profile image
Pasjc in reply to Purple_Watercolour

Thank you so much we're at the mercy of people who don't see us a human xx

Purple_Watercolour profile image
Purple_Watercolour in reply to Pasjc

That is true! Keep going and keep pushing! I hope you can get an appointment soon! Xx

ROBERT_CARMICHAEL profile image
ROBERT_CARMICHAEL in reply to Pasjc

As a long retired Doctor I am sorry to hear of Doctors behaving like these cases but I think 90% is from the bureaucracy that seems to have taken over the NHS at all levels

In my experience, some appointments people were like this long before the pandemic. In my case it was podiatry being nasty about rearranging an appointment, even though I gave them three weeks' notice. Complain until it gets sorted. They are not employed to be so unhelpful.

Pasjc profile image
Pasjc in reply to

Thank you I will xx

Pasjc profile image
Pasjc

It was Saturday when I received the letter so I'll be ringing first thing Monday so fi gers crossed your right x

Georgiab123 profile image
Georgiab123

That’s terrible put a compliment in to the hospital

Jora profile image
Jora

Poor you. I wonder if your GP would give you a local steroid injection to tide you over. J

Pasjc profile image
Pasjc in reply to Jora

A few months ago the hospital tried an injection ive never known such awful pain apparently there is no space in my knee joint and it hit bone so ill never never have another one honestly I have a high pain threshold as most people on here do but this was way way outside my tolerance level xxx

Sallysuk profile image
Sallysuk

Maybe not such a disaster as I was referred to a physio too. The first lady was extremely helpful but I was thereafter seen by a bored young man who gave me a series of excercises that made my condition worse. I told him that I was worse with a lot more pain and tingling but he carried on yawning constantly and declared I should be discharged as he could do no more to help. I readily agreed as I had no confidence in his abilities as his excercises were and have (18months on) made my condition considerably worse. I have mentioned the pain and tingling to both my GP and rheumatology nurse but no reaction as I think they do not like their colleague being critisised ( I did not mention the yawning)

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