Delay in getting a Rheumatology appointment

Hi Sue (Kalulu),

Thank you for getting in touch with us and welcome back to our online community.  I hope you are finding it a supportive environment.  My name is Adrienne and I’m one of the Cancer Information Nurse Specialists at Macmillan.

I’m so sorry to hear how long you have been waiting for a rheumatology appointment.  Referrals are prioritised based on the suspected condition and its severity, so urgent referrals should be seen in a few days to weeks but non-urgent referrals can take longer.

Unfortunately, we know that there are increased waiting lists in the NHS meaning there is back log of patients waiting to be seen.  The reason for the text message you received is to reduce some of the back log by removing inactive referrals.  For example, if someone’s condition has improved or they have sought treatment elsewhere (such as the private sector).  It also keeps the hospital records up to date by verifying patient needs regularly. 

All of that being said, it doesn’t help the fact that you are in pain and understandably worried as we come into the winter months. 

You could speak to your GP again. They could contact the hospital rheumatology specialists to get expert advice on how to manage things while you are waiting, using the NHS Advice and Guidance system.  This is usually done before or instead of a referral but it’s still worth discussing this with your GP, given how long you have been waiting.

You can check the waiting times for the hospital you have been referred to using the My Planned Care website.  It has a ‘find my hospital’ section where you can look at average waiting times for your local hospital. 

You could also contact the hospital directly.  Ask how long the wait is likely to be and tell them you are willing to accept any cancellations.

It’s great that you are staying active as regular exercise is so important.  As you’re worried about walking when it’s frosty/icy outside, have a look at these videos on how to improve strength and flexibility, which can be done at home.  Any movement is good movement.  I’ve also included some aerobic exercise videos that might be helpful for you, as long as you are able (always ask your GP if there is anything you should avoid doing before undertaking these exercises).    

A good diet is also vital for your bones so I’ve added some information on food for healthy bones for you to look at. 

I hope this information was helpful but please don’t hesitate to get back in touch with us at any time.

Take care and best wishes,

Adrienne

Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us. 

Ref:  AMc/KG

Thank you Adrienne, I really appreciate all your good advice!

Sue