West Pennines abysmal changes

Sorry but I need to off load a bit. I am a patient at Rochdale Rheumatology Dept have a fantastic consultant and until recent changes fantastic support from the rheumy nurses. Since Xmas I have had no medication due to a severe reaction to Cimzia. During the past 3 months I have been tested for fibrosis and now I'm told phew I don't have that but now apparently I have nodules on my lung and they are referring me to a chest specialist. I have learned all this by post, during this there was no rheumy nurse help line for over 3 weeks, the message constantly stated due to illness there was no one to answer the phone. Finally after trying to get some explanation about the letters the message changed too. " leave a message for the rheumy nurse, however we will not give any results and it could take up to 7 days for your call to be returned ". I eventually got a message on my phone while I was with my GP who was trying to get some information for me. The message was from a nurse who I had never heard of who said " sorry we can't give any results out and if your medication is not working give us a call back. Alternatively phone your specialists secretary " had she checked before phoning she would have seen I'm waiting for medication. I desperately need some. I was furious I phoned the specialists secretary who told me I had to speak to rheumy nurse. She advised that the nurse was in the office just keep phoning until she picks up, I phoned the nurse 3 times answer phone she did not pick up. I was later contacted by a nurse I knew who advised me that the helpline had now been centralised, so I it seems I could never guarantee on getting a nurse who knew my medical history. She advised she would contact my specialist last Friday. Since then I have heard nothing. We have gone from a system were we received help, assurance and advice to one of knowing absolutely nothing. The stress of not knowing is making me ill. When you read terms like Fibrosis and Lung Nodules it's terrifying. My GP says my specialist should be explaining things. I just don't know where to turn. I registered a complaint, it states you will receive a call within 3 days. No call. Sorry for ranting.

Sharon

14 Replies

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  • You could try contacting your local PALS as they should be able to speak to someone at the Rheumatology department and find out what's going on regarding the department. It's so annoying when things have been going well and then changes are made, we are told we will get a better service yet it never is! That's all I can suggest, sorry. Clemmie

  • Thank you Clemmie I have put a complaint in. Someone from pals is supposed to be phoning me back. To be fair I put the complaint in last Wednesday and forgot to give my phone number. So Friday I emailed twice with phone number, but no call yet.

    You are right about the service. I can accept illness but there are 3 nurses at Rochdale and only one was ill.

    Thank you for responding.

  • Hello

    You can try PALS at the hospital,they deal with hospital/patient problems.

    At the moment a new group that is managed by ADAPT called HEALTHWATCH has been setup Nationally. In Northumberland the actual Healthwatch is not running correctly as yet because it is going to be provided for by Volunteers, I myself have been attached to my GP Participation Group, and am still awaiting further placement so possibly PALS is still the best bet for you to contact, You can get their telephone number from leaflets in hospital or GP Surgery. They will act for your interests .

    Also I would feel your GP should be contacting the hospital, you could explain you are worried so He/She should contact them for you, under these circumstances.

    Many of our hospitals up here now are run by a central telephone network where they put your calls through to the various hospitals and their departments, so you will need to possibly go through that exchange.Sadly I do not know the system and telephone numbers Again your GP should have this central telephone number.they will put you through to the correct extension. Ask your GP Receptioist.

    Good Luck

    BOB

  • Thank you Bob. There has always been a single exchange. This isn't what is happening here. It's a central rheumy nurse line were you may not speak to a nurse based at your hospital or who even knows you. My GP managed to obtain my CT results from the hospital data base some 31/2 weeks after the scan. That's how I found out I didn't have Fibrosis but I had nodules. To be fair to my GP he had no idea what the nodules meant. So when I finally spoke to a nurse the day after she said I should have received a letter. Which I then received the day after dated 8 days previous. This letter said I needed to see a chest specialist because of the nodules. It didn't say when, I don't know if this is urgent, malignant something that is caused by RA because no one will speak to me. My rheumy nurse has always been able to explain, but I can't get any answers.

  • Hello shazbat

    We here have a direct line as well as above, so we have several options there are also ring back 5 calls and an answering machine.

    When you go to the hospital ask once and you will then always get a copy of the letter sent by your specialist to GP, then you should be able to time an appointment between

    yourself and GP

    to discuss the findings, this time you seemed to have been given a copy or a further letter.

    If they have found nodules in the lung you will need Xrays, these should have been arranged by the clinic if this has not happened, that possibly can be put down as bad practice. Talk to your GP and arrange a lung xray. At the least your GP should speak to specialist.

    All the best

    BOB

  • Complain complain complain and phone Rheumy secretary back and tell her the advice she gave didn't get answers. Tell her if she doesn't get you a answer about a potential lung problem you will be writing to the hospital chairperson . And do !

  • Hee I'm in one of my bossy moods !

  • Thank you Allanah must admit they are really really annoying me now. My husband said start fighting, until I retired last year I was a National Officer for a Trade Union. So I'm going to take your advice and start writing to everyone.

    Thank you x

  • That's what to do. Channel your (justifiable) anger, and pester everyone, your hospital, consultant, health board, MP, and if you are a retired member, your trade union!

    They only get away with this awful treatment if noone makes a fuss!

    There's always the press as a last resort!

    Above all, try not to let the stress make your disease more unbearable.

    I'm in the middle of formulating a complaint myself, so know how hard it is!

    Best of luck! M x

    ps is there a local NRAS group that can give you some support?

  • Thank you all so much. I have just phoned my pals, the lady dealing with my case apparently is off until Friday, but I advised the lady who answered that I was not waiting until then I had waited long enough, she must have realised I had enough, she was brilliant she said I had been referred to chest specialist but there was no appointment on the system, so she went to investigate, she phoned me back within 30 mins. She had emailed the director of Rheumatology, my specialist plus she had arranged for an emergency appointment with the chest specialist. She told me that I should receive a call or an appointment for my rheumy specialist. I will let you all know how I go. And thank you so much for all your support, this site is fantastic. X

  • Its horrible we have to fight to be heard v.. good luck xx

  • Morning everyone, well everything moved yesterday after mentioning my MP the press etc. I received a call from my rheumatologist who explained what the CT scan results mean. Although it's still worrying at least I know what they are concerned about and they have promised me an emergency appointment in the next 2 weeks with the chest specialist. One thing he did say was that our disease should be called " rheumatoid disease" because although mine does attack my joints it also attacks my lungs, so they have to be careful with biologicals. However he referred the second part of my complaint back to management and that is accessibility to our own rheumy nurses instead of a pool of people you don't know. He fought many years for the system we had, therefore I'm going to pursue this. My husband listened to the recorded message yesterday he was furious. Especially when it said it may take 7 days to get back to you but it goes on to say " and at busy times you may not be able to leave a message so you will have to phone back " it's disgraceful this illness is serious enough without brick walls like this, it's imperative that we have a someone we can trust who is also a direct line to our specialist. So my friends I will tell you how I progress and once again thank you for your support.

    Sharon

  • Great to hear your immediate problem is partially resolved! Well done!

    Just hope something comes of your ongoing complaint. I know I would be devastated if our helpline was cut

    Look forward to hearing of your progress. Luv M x

  • Thank you my friend. I received a call today for an emergency appointment at 8.30 tomorrow morning for chest specialist. But I intend pursuing my complaint in relation to the helpline. Had it not been messed with I would not have had to complain. I'm going to continue on behalf of everyone. I will update you with the outcome.

    Love Sharon x

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