We need your help to identify changes in your rheumatology service

We need your help to identify changes in your rheumatology service


I'm Ailsa, CEO of NRAS, and I have just come back from the Royal College of Nursing Rheumatology Nurse Annual conference. With the current economic situation, we are hearing about a number of services where nurse specialist posts are being lost, or where specialist nurses are being sent back onto wards which is a waste of their skills and means that telephone help lines are being suspended, new patients cannot be seen within the necessary time frame, etc. If any of you are aware of any of these sorts of things happening in your hospital, can you please let me know? My email is ailsa@nras.org.uk

We are supporting the RCN on their Front Line first campaign, and we need our specialist nurses and multidisciplinary teams, so let us know if your unit are experiencing problems.

Many thanks!


25 Replies

  • I attend St. Lukes Hospital in Bradford and my access to a Specialist nurse has gone from being one where I could talk to my nurse on any weekday to being one where there was an answer machine to being what it is now- an answermachine only availabe at certain times on certain days.

    I'm afraid our RA needs are not this convenient!

  • I thought I had better add that it is quite a while since i attempted to contact my nurse as it just wasn't worth the hassle so things may be different now.

  • Thanks for flagging this Julie, one of the specialists from Bradford presented at the conference and things are not good - nurses being sent back onto the wards and no helpline service there at the moment.

  • My Specialist nurse has been on long term sick for the past year. This has caused huge problems in the rheum dept as the doctors have had to do clinics she used to doand this has resulted in increased waits for appointments. There is supposed to be a new nurse starting this month so fingers crossed. When I have needed advice I've had to leave a message and although a nurse always rang back within 24 hours she really didn't have the specialist knowledge to answer questions.

  • I have e-mailed you Ailsa.

  • Hi Doreen, I haven't received an email from you. Just thought I should mention that.



  • Thanks for letting me know Ailsa. Don't know what happened there, but I'll send another one.

  • Hi Doreen, I have flagged the issues you have identified to the RCN. Many thanks.


  • Afternoon Ailsa,

    I'm based in Clacton, Essex and I've never had a specialist nurse or have any other contact in relation to my RA other than my 3-4 monthly appointments.

  • Hello Sara

    thanks for flagging this, I will let the relevant people at the RCN know. Do you have access to any other members of the multi-disciplinary team, like physio, OT, podiatry? Is it that you don't have a nurse specialist at Clacton or that you didn't know you could speak to one if you wanted to? If we can be of any help to you over anything, or if you would like to speak to a volunteer with RA in your area, just call our helpline.

    Best wishes


  • Hi Ailsa, sorry I don't believe I replied as haven't come on here much. At the time of posting last i didnt have contact with anhyone else, i have since sen podiatry but they wish me to purchase what i class as 'their type of shoe' so haven't gone anything further with this yet. We didn't have a RA Nurse at all, however i understand we do now have one for the whole of our area, so she covers 3 hospitals roughly (Clacton, Colchester & Harwich) but you can only see her if the reheumy sends an appointment for you to see her. So i only get to see Rheumey every 4 months

  • The last time I saw my RA consultant she confirmed that she would prescribe infliximab. No change in my condition or anything like that. I was a bit surprised because I've been receiving these infusions for about 8 years, and it has never been questioned. I shall be watching out for any other indications that it may be being reviewed. Western General, Edinburgh.

  • I attend Darent Valley hospital in Kent they are a very good team but extremely understaffed. Due this problem the nurse has had to close her help line. I am now in the fortunate position as I have commenced infliximab infusions, and see her eight weeks as she works in the clinic.

  • Hi Ailsa

    Hope things go well with you. Harrogate Hospital has put a freeze on recruitment (not clear how long it will last) so at the moment one of rheumatology sisters who retired on 4/2/11 is not being replaced. All of the rheumatology - who are great - work really hard already to meet our needs so this is bound to have a direct impact on patient care and on the health of the team too.

  • AILSA, THIS BLOG is Brilliant, sorry for shouting fRomthe tree tops ,but its is great, lotsof jobs under threat at gloucester royal mine and some rhematology nurses posibly who knows, at the moment, they are are targeting cancer nurses I THINK?, HOW SICK IS THAT, signed off for ten days, awaiting endoscopy, methotrexte??!!,(did that questionare by the way!!) will be back after ten days!. the health forum meeeting on forms, in feb was great, I think joining nras was the best thing I EVER DID!, CAN THANK YOU ENOUGH XX

    Alison Bamford aka summer

  • Hi Alison, thanks for the feedback and so glad that you think the new Healthunlocked nras site is good. Good luck with endoscopy, do you mean you are waiting to start MTX? The focus group was really helpful for my workshops on patient reported outcomes at the nurse conference so thanks for your input!


  • no off methotrexare, started gold injections, just have had the test dose it went ok

  • Hi Ailsa

    So far things look OK at the Haywood in Stoke. I'm not aware of anyone being lost from the out-patient team, and morale seems good. However N Staffs is often at the end of the queue for resources, and things may well change for the worse once revised budgets are applied.

    I hope you are "well" and contented


  • Hello Tone

    Good to hear from you and that all is well at Stoke. Keep me posted if you hear anything re N. Staffs. Life at NRAS is manically busy at the moment (when is it not?!). Hope you'll come to our Member's lunch to celebrate our 10th birthday - it's in the Warwickshire area at end June.

    All the best

  • Hello Alisa,

    I currently attend bolton hospital and lever chambers. I have to say I have found there service appaling.

    When I mange to get an appointment then they are great however getting an appointment is impossible.

    I got a appointment for physiotherapy and I was so looking forward to it as for weeks and weeks I had what felt like a knot in the middle off my back.

    I was just handed some excersice sheets and told how to follow them , when I asked about heat treatment and physio massage, she said they dont do that anymore they just teach the patient to do excersies!

    Needless to say as I couldnt cope much longer with the pain I had to pay private and after a few sessions I had my pain sorted but was £200 short!

    There is no helpline for emergency or urgent help or appointments and the only people you get to speak to for help is the receptionist or secutary.

    The goverment need to help the hospitals out more how do they expect us to get into work if they leave us 6 weeks waiting for an urgent appointment.

  • Hi there,

    thanks for the feedback. We have an NRAS group at Bolton and I know there is a nurse specialist so thought there was a helpline, but will check this out. Are you aware of the NRAS group? If not please email Sue@nras.org.uk for details of how to get in touch with the Co-ordinators of the group, it might be helpful for you to go along to a meeting because it's an informal opportunity to talk to the rheumatology team about your concerns.

    Best wishes


  • I attend North Hants Hospital in Basingstoke. When I first was diagnosed they gave me a sheet with the Rheumy Nurse Hotline. Weeks later I went to use it as was very concerned about something.....all I got was an ansaphone message saying that this service was now closed!

  • thanks so much for the feedback we will forward this to the RCN. How are you now getting access to urgent help? Who do you ring? (eg, NRAS? your GP? your consultant's secretary?)



  • How are you now getting access to urgent help? Sorry but i would have to laugh personally, urgent help - I certainly have no one to go to :( Have to put up with anything until i see Rheumey

  • been trying to get an urgent consultant appointment.. have given up!! head physio has emailed the consultant.. gp has rung the consultant sec!! have had blood viscosity reading of 1.9!! and now oramorph.. stair rails and having bathing aids assessment..

    Alison Gloucestershire foundation trust

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