advice?

[Luludean]

Things are accumulating.

Loss of trust in new part time gp.

Not been seen in cardiology for 3 years( I have had mitralvslve repair snd persistent AF for 8 years)

Inder rheumatology for multiple RA ( osteo?) conditions . I do not actally know what I have. No appointments , no medication.

No reply from PALS

My RA has accelerated, large new boney things on top of foot, great pain on walking , affecting hip and the ankylosing.

Result non stop pain , lack of trust in my medical supposed support , living alone my AF has gone wild , I am used to dealing with it( long term mediication) now I have chest pain . Never had chest pain before . Probably stress , I know but , who to turn to.

Not gp , sobbed on her, got referred to older patient mentsl health dept…fury!!!!!

But did see a wonderful man , cslm and very thorough , he pronounced me very sane but , totally overwhelmed by life and badically neglect. So, discharged from there.

I had, spirit , hope , determination to paint, walk , quite brave ..

all that has gone , I am exhausted and very afraid . Loss of point ..L

[Runrig01]

I’m slightly confused. You say your under rheumatology, but don’t know what you have and that your on no meds. Then you go o on to talk about your rheumatoid arthritis and ankylosing spondylitis. If these are diagnosed, are you not on meds for them. I had a look at your profile where you mention biologics and humira. If your on these meds, you should be reviewed 6 monthly, even if that’s by phone, and havd 6 monthly bloods done. Have you tried ringing the rheumatology and cardiology secretary. If your teams don’t hear from you they will assume all is well. I assume you have copies of your clinic summaries, they should list the plan and time frame for review, so I would check these then call the secretaries for answers. If you don’t have copies you can ask the gp for a copy, or the relevant secretary. Is it possible cardiology have discharged you back to your gp?, I havd several family members who’ve had similar surgery, and were discharged about a year afterwards. Hope you get answers, unfortunately these days, we have to take responsibility to chase things up ourselves, or risk slipping through the net

[Luludean in reply to Runrig01]

Hi Runigro , thank you for your letter/ post. I think my reply to Rosie and little birds would answer your confusion . L

[3LittleBirds2]

Hi Lulu

I'm sorry to read you're having a tough time at the moment.

Having been in a similar situation myself recently, I know how isolated you can feel when you feel you are battling to be heard, it's very stressful and totally draining, I fully understood how people just feel like giving up, I had my Husband fighting my corner for me also..he took over when he could see I was getting nowhere a d was going down hill fast, I fully empathise how people on their own must feel.

Can you not take a breather and stock, you have been hold you're mentally sane which of course you are..you're worn down and overwhelmed as told to you by the professionals, maybe email PALS again chasing your complaint, can you take a friend or family member with you to a GP appointment, I did this when I was battling as back up for me and what I was saying? If you have chest pain you need to be seen or listened to you?!

I would also recommend the NRAS helpline as well, you need some support and some advice, it's a very lonely place when you feel it's you against the world and you are struggling with your health but you no one is listening . You've reached out on here and that shows you still gave fight in you.

All my best wishes and let us know how you get on. Xx

[Luludean in reply to 3LittleBirds2]

What a lovely reply Littlebirds . Thank you.

Just been life drawing with nice people so now feel more normal . Will phone PALS and the pain clinic . I have seen aprivate clinic near here offer steroid injections ( ££££££) will pjone them too but nervous of clash with heart pills . My experience with local private hospitals has been dreadful .

But I will enquire. Louise

[3LittleBirds2 in reply to Luludean]

Oh good, it's good to get out and do something we enjoy and that relaxes us too isn't it. I do understand the challenge of getting two hospital departments to talk to one another or read the letters they are copied in too. I am not a pushy patient by any means and only contact them when I have too, and when I was doing well on my medication that was rarely. I hope you can get hold of PALS as they do take any complaints seriously. All my very best wishes to you and let us know you get on xxx

[KittyJ in reply to 3LittleBirds2]

PALS there do not reply, I have two people I work with unable to get any response from them. It’s really bad.

[3LittleBirds2 in reply to KittyJ]

That is awful , maybe they should do what Amnesiac suggests and write to the Chief Executive of the Hospital. They responded to my complaint and I did manage to get a call I am only talking about my experience, they told me they acted on feedback about Departments but I do not have any faith that things will change, it's a scary situation isn't it, every man for themselves.

[KittyJ in reply to 3LittleBirds2]

Yes I’ll suggest that to them but I don’t hold out much hope.

[Rosie-NRAS Partner NRAS]

HI Luludean, We are sorry to hear you are having a tough time at the moment. If you would like to have a chat and offload how you are feeling, please know you are always welcome to call our NRAS Helpline on 0800 298 7650. We are here Monday to Friday, 9.30am-4.30pm and are always happy to help. Kind regards, Rosie@NRAS

[Luludean in reply to Rosie-NRAS]

Thank you Rosie , I think we spoke a while back and you were amazingly kind and instructive. I did follow much of your advice but it seems nothing has changed. One department simply does not talk to another. I fid ask rheumatology for a multidisciplinary consultation and was point blank reused. I have been offered Methotrexate , 2 biologics made me ill, I do not want to take Methotrexate. But , Offered nothing else.

I think my new part time gp wrote twice to Addenbrookes asking for urgent appointments . If .. the letter went It has had no success.

I know I should contact my local politician etc but nothing has worked so far and I have given up.

Family live mainly abroad , close friends I had , have died in rapid succession , it happens . But , usually I have a good sense of humour , care for people, I am active ( too sore now) and, garden , cook , read etc . Not sedentary but vegetating . L

[Amnesiac3637]

You poor woman. I’m constantly astonished by hearing of the poor medical care some people on this site receive from their medics. You’ve had a really unrewarding and unsatisfactory experience with different departments at the hospital and so it’s no wonder you feel as if you’re going round the bend!

I don’t know what NRAS has discussed with you previously but they’re really good and it may be worth having another chat as Rosie is suggesting. At least you’ve got someone on your side on the end of the line and there may be something else you could try.

If I was in that situation I would ask for a double appointment with the GP so you can thrash out what’s going on with cardiology and rheumatology. Take a list of questions and a friend if possible. Get a copy of the letter the GP sent to the department, write (not email) to the chief executive of the hospital and copy it to rheumatology and PALS. The sort of treatment you’re getting is not acceptable in anybody’s book and it’s clearly causing you a lot of stress.

It may be worth holding fire going to a private hospital which will cost a lot of money, may not be up to date with your medical history and having injections of steroids may not be in your best interest. You should be treated effectively by your own rheumatologist. Can you change to a different Integrated Care Board? You have the right to be referred to a different hospital/ rheumatologist if your treatment isn’t acceptable.

I have been a clinician in the NHS for years and it makes me really sad that some things seem never to change. Try to take control if you can, it’ll make you feel less overwhelmed. Do hope you can get a resolution. Shout politely and keep on shouting - and going to Life Drawing classes!

[Luludean in reply to Amnesiac3637]

O thank you amnesiac !! Very kind supportive post!!

For years , I had a brilliant no nonsense youngish doctor , he was good and made me laugh . Then last covid year the practice took me and many others away from him without telling us . I have of course written and asked to be his patient again . Twice I have been refused . I think many younger drs are afraid of people like me who have oodles of «  comorbidities » ( horrid word) and also very wary of challenging hospital departments.

I may sound critical of that department but , when I see how A and E , the most challenged , abused by the violent or drunk, over crowded , under paid department , I am in awe !!!!! I recently spent 2 long days in there and , have witnessed the unfailing, efficiency, calm, kindness and cheerfulness pf all staff !! From ambulence crews , porters , nurses to consultants !! Thank you A and E.

[Doggo2]

Hi Lulu

My husband had (has) AF which he is on medication for but was told by his heart specialist that if he got chest pains then to go to straight to emergency. Maybe a trip to A&E and might help to sort out ?? Great to do something relaxing for yourself!

Hope you get sorted!

[Sarmita50]

I am so sorry to hear this.I am also thorughly disgusted with GP service. Seeing a specialist has become very difficultt too. My routine check ups with the Rheumy has not happened for the past 2 years.I have a pace maker,,irregular breathing but very difficult to access the service.You said you will write to your local MP but they just want votes ! I am not trying to discourge you but this will take time.You should ring 111 to take their advice .They will refer you to A&E if you have chest pain.Then hopefully the ball will roll from there.Good Luck Luludean

[Luludean in reply to Sarmita50]

Gosh Sarmita you sound brave !!

I am now a wimp , unlike so many on this forum. The thought of non stop pain is frightening me .

So often heart and rheumy problems go together, which, is why cardiology ought to communicate with rheumatology.

I am hoping chest pain is reflux , it isn’t acute , may be stress. My last trips to A and E lasted many long hours , lovely staff , enduring quite a lot of very rude patients. Full of people who should have simply seen their gp.

I hope you have proper diagnoses , proper medication and proper care! A lot to hope for but we are better off than so many . Are you in uk? Louise