This is Care Opinion [siteRegion]. Did you want Care Opinion [usersRegionBasedOnIP]?
Care Opinion

Lack of care for ongoing illness

Posted By Fi11

"Lack of care for ongoing illness"

About: Biggart Hospital / Physiotherapy General practices in Ayrshire & Arran University Hospital Ayr / Rheumatology

(as a service user),

I have had to contact rheumatology directly myself to be seen. I am unable to get the GP to take this situation as something worth considering.  I was diagnosed with RA maybe around 3 years ago now, I have lost track.

I have dizzy episodes, and extremely sore feet. Buzzing in my ears, and tbh they don't care.

What is the point?  I would certainly say that RA is up there with the most miserable things that can happen. When did lives become so unimportant?# covid! 

I have tried. Yesterday I fell into a shop display. The doctor says I need my eyes tested first. Last month fluid was running out of my ears, It  still happens, with constant hisses.  So I believe that perhaps rheumatology should now be the ones to take control. 

My feet are so sore. A physio phone call? Really? How will that help? Neck pain and grinding... yes I am literally a pain in the neck but OMG. When you read about RA the literature tells you to keep on top of it, report any change in your health! #what joke! No one cares.  Fact 

More about:
Do you have a similar story to tell? Tell your story & make a difference ››

Responses

Response from Karen Wilson, Clinical Nurse Manager, Biggart and Girvan Hospitals, NHS Ayrshire & Arran 2 years ago
Karen Wilson
Clinical Nurse Manager, Biggart and Girvan Hospitals,
NHS Ayrshire & Arran

Submitted on 08/04/2022 at 09:21
Published on Care Opinion at 10:10

Dear Fi11

I'm sorry to hear you are having so many issues related to your RA. Unfortunately I support nursing in-patient services however I am happy to ofer some advice that might help you on your journey. I would make an appointment with your GP and write down and take a list of all the questions you have surrounding your condition, I would make an appointment to have your vision checked as this might be hindering your mobility, the physio phone call may be of some help as they will explain some exercises you can do to relax your muscles whilst you wait on a face to face appointment. A referral or a visit to a private podiatrist may also help your foot pain. Sometimes it may be as simple as adjusting your foot wear to help your foot pain.

I'm sorry you feel no one cares, we do. As your message does not mention your personal circumstances or age perhaps looking into some of our 3rd sector voluntary organisations may help. VASA (Voluntary Action South Ayrshire) 01292 432661 may be able to help you find a support group that would give you some benefit.

I do hope you find some releif soon.

Kind regards

Karen Wilson

Clinical Nurse Manager

Biggart Hospital

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

Update posted by Fi11 (a service user)

Thanks for your email, however I have tried the change in footwear at considerable expense each time. I would talk to a GP but to be honest the amount of time I have taken issues to the GP, I was told menopause for it the last time I ended up in hospital.

It's about a condition being managed, and as per covid like everything else it has been put to the back burner.

The medication has never been reviewed, in fact I was on a biological and the last time I attended I was told to stop the medication because I had huge blister like blood bubbles on my face that every time I used water they burst and bled. I did stop the medication, but they never said try another medication.

I appreciate that you tried to give the knowledge you have to me, appreciate that you took the time. I have also had a range of other symptoms that may or may not be related, fluid running out of my ears, dizziness, headaches, and aching. No covid - so I have just accepted the symptoms, and the idea that it's pointless telling anyone because I don't believe they will actually do anything about it. I'm waiting for an appointment with ENT but I have to get my eyes tested first as was explained. I have just been bereaved so I don't really have the inclination to do anything about this right now. As soon as I can I will. I believe my neck may be the issue with the dizziness. The GPs certainly don't listen, the dizziness has been on and off now for 7 years, possibly longer. I am allergic to medication, but they never actually took time to find a cause.

My neck crunches if I try to turn it, I get dizzy if I move too quick like I'm drunk. They suggested a cause but I'm not sure. Hissing in my ears all the time. # newbodyrequired

Response from Karen Wilson, Clinical Nurse Manager, Biggart and Girvan Hospitals, NHS Ayrshire & Arran 2 years ago
Karen Wilson
Clinical Nurse Manager, Biggart and Girvan Hospitals,
NHS Ayrshire & Arran

Submitted on 11/04/2022 at 09:53
Published on Care Opinion at 10:32

Dear Fi11

I'm sorry for your recent bereavement, at times like this everything seems so heightened and we feel very alone. I can help signpost you to a few areas that you might get benefit from.

Your GP will have a note in their surgery of local Bereavement support groups and menopause support groups, or if you stay in South Ayrshire there is the Menopause Cafe run by Ayrshire Woman's Hub at 42 Alloway street Ayr, they offer meetings and support to woman in the menopause offering coffee mornings, evening support classes and many other helpful tips and advice.

If you are not in South Ayrshire if you google menopause support in your local area there will be cafes and groups in both North and East Ayrshire. NHS Ayrshire and Arran also has a Menopause Clinic that is support by our Gynaecologist, this is based at The Gatehouse in Ayrshire Central Hospital Irvine and your GP can refer you here for help and advice if they think it is needed.

Cruse Bereavement Care Scotland also has a very easy to use website and offers support through bereavement - 0808 802 6161 and they will be able to help you find support in your local area.

Managing a chronic condition on top of your recent bereavement and menopause will be hard and I do hope you can find some help in my suggestions, it is important to remember you are not alone in your struggles and there are people who can help you.

Perhaps making an appointment to speak with your practice nurse may help, they manage a lot of what we call chronic disease symptoms and they will know the GP that has a specialist interest in your condition and may be able to help support you that way.

I do hope you manage to find some help and that this information may be of some use to you. Just remember one day at a time and try not to worry about tomorrow it is not here yet.

Good luck and best wishes

Karen

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
Opinions
Next Response j
Previous Response k