Very little help from my rheumatology team.

I have been suffeing flare ups for last 2 months. I contacted my rheumatology team to ask for help as my knee had swollen up. Feet really aching. Chest heavy entire body just completely ached. Not sleeping as in pain. Tired so very tearful. Pain just got too much. I left numerous voicemails asking for help with this. But never had any reply. I contacted my general gp. Who answered but not knowing anything about rheumatoid arthritis he just asked what drugs do you need and I will give it to you. I have had steroids before which helped as a short term thing. But not long term. I was also prescribed tramodol for the pain which helps. Just makes me drowsy. But how can I prescribe my own drugs I am not a Dr. Can't take any more steroids took my full amount. But still not got an appointment with my rheumatology Dr. I had an appointment booked for the last 6 months. For Jan 13th. So was looking forward to finally seeing a Dr that knows what he is doing. Then I got a letter saying it's been cancelled. Tried ringing my team to rebook. But no luck as of yet. Even begged the nurse I spoke to today. I need help. I am at the end of my tether everything is inflammed and burns. Even feels like it's spreading from wrists to elbows know. Feeling completely ignored. All alone. Just need some advice. I need a good. Nights sleep. No pain. And to get on with day to day life without dragging my feet about and not being able to grab things properly. I M only 44. What's going on. Obviously my sulfasalazine and hydrochlorycoxquine ain't helping. Xx what's going on with the NHS.

42 Replies

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Nickijk73

a year ago

@suzannedale - I can't believe there are still people in this day and age that can,and do,prey on the sick and vulnerable - I truly believe in karma and I hope these delightful people get what's owed to them... hopefully sooner rather than later!!

And I'm so sorry that you had to endure that to realise the hard way.... their is a word to describe vultures like these,but I certainly couldn't type it on here!!😤😤

AgedCrone is correct in that getting PALS(patient Liasion) involved would prob be the next step in order for anything to be done promptly,or chase up your GP,and get them to write a letter on your behalf explaining how the delay is effectively making your symptoms worse,I did this after they cancelled a very long awaited appointment just weeks before it was due,and then rescheduled for 7 months later!!! It ended up with me seeing the rheumatology nurse for the first time,but she did more in that one appointment than all of my rheumatology appointments previously - it was down to her that I was put forward for Enbrel,as at the age of 42 I felt that I had no life quality at all,esp as I was reduced to having to use a Powerchair at that point too - I literally looked like someone else from the waist down there was so much swelling and inflammation going on.... just having clothes against my skin used to irritate and flare me up too at that point - so to go from a gym bunny at 40,to being in a wheelchair at only just 42,I was desperate to try anything. She truly was/is an angel,and she could see straightaway what I'd spent months trying to get my consultant to understand. There are definitely ways of dealing with cancelled appointments,and I think the two methods already advised(pals or gp) would be the best place to start right now.

Good luck x

in reply to linda-5502

Omg - no wonder you're in trouble,I used to live in west Thurrock so Basildon was my local hospital and they have got to be the worst hospital I've ever experienced for anything!! I'm actually quite lucky as since I've been diagnosed I now live out by Colchester,so even though my consultant is based in Colchester,I get to see him at halstead hospital,which is literally two mins up the road from me. I've been lucky in the fact I got on his list because I used to have private healthcare through work,and went onto his NHS list that way,but I've had to use Colchester hospital once for a different consultant,and it was pretty much a free for all - you never knew who you were seeing,and they didn't even ask any questions,which gobsmacked me as I'd turned up in a wheelchair where things were that bad at the time!! I've also had my moments with my consultant because I'd dared to question him at one appointment,and it got to the point of me asking the nurse how I'd go about putting in a complaint about his behaviour towards me,and I think things must've been said behind the scenes,as my next appointment was great and he actually treated me like a person again. It's just so frustrating trying to get hold of him inveteeen the 9/10 months between appointments,the phone just rings and rings for the dept,but I've been lucky enough to either get hold of one of the nurses and ask questions that way,or just nip into the hospital up the road and ask the receptionist there,as it's such a small place,as much as they don't answer the phones,they are very friendly and helpful face to face 😊

in reply to Cynthialcj

Hi Cynthialcj

I started on Enbrel back in Jan2016 ,and I,plus my family and rheumy nurse, noticed a marked difference within a month - it has certainly given me my life back,and even though it took a full 8 months before everything finally clicked into place,when looking back at pictures from before I was on biologics,I still can't believe the pics are of my body!! The difference is incredible - if ever I feel I'm having a bad day now,I just look back at those pictures and realise how far I've come and exactly how much Enbrel has kept the inflammation to a bare minimum - ok,so I still see lumps and bumps,but it's almost as if they're nothing in comparison to before. Hang tight,it may take a while,like me,but it will definitely be worth the wait. X

Minty66

Treza, I'm so sorry, but this bl###y PC has a mind of its own and decided to send an early email to you again!! I guess what I'm trying to say is that perhaps you could get someone to take you to the clinic and demand help. It's not easy, I know, but why should you suffer when there's no need to. They will help you when you get there. It's your body and your pain. Back yourself, respect yourself, you deserve help. The system is letting you down, don't let yourself down. Please, please be brave, and don't be embarrassed about caring for yourself. You're human and being treated inhumanly.

The NHS is in crisis, it's doing its best, but please bite the bullet, like I did, and I'm sure you'll find caring people who will be horrified to know that you're suffering.

Good luck Treza.

Minty.

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