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Rheumatology appointment.

Posted By lostinthesystem

"Rheumatology appointment."

About: Forth Valley Royal Hospital / Rheumatology

(as a service user),

I moved to Forth Valley in April and seen my new Gp at the start of May and they referred me to the rheumatologist in Larbert Forth Valley Royal Hospital. I received a letter with an appointment for the doctor in Rheumatolgy 5 weeks later. My mum put in a holiday from work to come with me as. my memory isn't the greatest and I arranged child care for my little one.

I received a call the day before at around midday to tell me my appointment was cancelled and I would receive another in the post. I advised that I am on biological injections that are not working for me and I am really struggling with day to day activities so they advised they would have the biologic nurse call me. A lovely nurse phoned me and advised that they were unable to help without me seeing the consultant and that I should phone the appointments team and make an appointment asap.

I phoned the appointments team and they have no appointments available for rheumatology and don't know when they will have appointments so I have to wait on an appointment letter to come sometime. I have various auto immune diseases that I am currently under treatment for but the main one is psoriatic arthritis which means I cannot properly care for my 3 and 5 year old children.

I suffer pain 24/7 and cannot be seen by my local rheumatolgy team. I am now relying on the healthcare team in ayrshire to continue to monitor me and supply my weekly injections so I will have to do a 3 hour round trip to see that healthcare team which is a difficult task in itself because I then have to find someone to drive me to these appointments and arrange child care and nursery and school pick ups while I do a 3 hour round trip as well as the time taken to see the team then will have to repeat this journey for any further tests, investigations and appointments with the rest of the teams that support rheumatolgy.

I truly feel left in limbo and left to suffer this pain and watch my children miss out on simple things in life because my local health care authority clearly don't have the provisions in place to cater for their patients.

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Responses

Response from NHS Forth Valley 7 years ago
NHS Forth Valley

Submitted on 07/09/2017 at 09:39
Published on Care Opinion at 14:14

Dear Lost in the sytem

I am sorry that you have found your transition from the Ayrshire Rheumatology team to our service complicated. The nurse team within Rheumatology here at Forth Valley do not see new patients which is why you have been directed to patient appointments to enquire if the cancelled clinic has been scheduled to be reappointed. Being on Biologic therapy does complicate issues as this can only be prescribed in secondary care and therefore I can fully understand your anxiety with further delay in moving your care to us. From the information you have included in your feedback it sounds like your disease process may be not fully controlled at present.

In this situation there may be ways in which we can help or intervene whilst you await first review. I am happy for you to contact me and we could discuss options which might improve your situation whilst you await your new patient review in the service.

In addition there may be investigation/ bloods that we could arrange in advance of your first visit to facilitate a more production consultation and transition of care. The nurse advice service number is 01324 566934.

Carol Ann Davies

Rheumatology Specialist Nurse
NHS Forth Valley

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by lostinthesystem (a service user)

Thank you very much for all your help Carol Ann, you have taken a lot of stress away, the communication with your team and the rheumatology team in the last few days has been excellent and reassuring. I do get frustrated as when I suffer my children suffer and it does make me push things more because the longer I have issues the more my children suffer and if I don't look after my children then I feel I fail as a parent so thank you again for your assistance this week, it is very much appreciated.

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