I have been struggling with vibrating feet and balance issues my ESR is raised and MCV so emailed Rheumatoid nurse already had a routine telephone conversation this week. She rung me about 6pm today obviously at home I don't think she had access to my bloods didn't really listen told me to go to walk in centre. I go there and they told me go to GP next week they don't do blood tests and I need neurology referral the unit was full I apologied I don't want to be there on a Friday night or anytime really. I have now emailed my nurse clinic and asked if her and gp can agree who is doing what can't get an appointment with gp only physician associate they can't prescribe or refer its like a revolving circus. Glad I am getting old and out of this soon. I don't know if I have side effects of methotrexate or hydroxychloroquine or deficiency of folic acid or b12 or something else going on asked if should take more folic no response from rheumatoid nurse if i think my methotrexate is causing issue stop it how do i know i am not the nurse. The Dr at walk in cheerfully mentioned parkinsonism ta..Tomorrow is another day... rant over.
Today our fragmented NHS: I have been struggling with... - NRAS
Today our fragmented NHS
It is always something isn't it darling. Your best bet is to get yourself to A&E and they will do the bloods for you.xxxxx
It's good to have a rant. Sometimes you do wonder about people. Today is a new day I hope it's better for you.
I don’t think you need to worry too much…. as we get older we get all sorts of funny feelings in our feet……why don’t you try some compression sock until you csn see your GP!
Until you finally get someone to listen to you make sure you are wearing supportive footwear, compression socks and use a dtick/frame indoors.I know you'll say I'm not doing that but if it saves you kissing the carpet !!!
A&E is for accidents and emergencies only. Depending on which area people are in, people that just show up who haven't had an accident or an emergency will be triaged off into the more appropriate service, which is what the walk in centre would be, which comes under Urgent Care. Blood tests for non urgent patients are supposed to be done at the GP surgery.
Things are changing now, and the route into urgent and emergency care should be though NHS 111 only.
And yes, I know, there are no appointments for this at GP surgeries either, but going to A&E for blood tests puts more stress on the system and the people who will be turned away and told to go to their GP.
So as dissatisfying this is, it sounds like the pathway was followed and worked as it should. GPs right now have their hands tied in that they have been given money to pay for PAs, but not to hire more GPs. PAs have been getting bad press recently which is a bit weird as we have had PAs in this country for several years. So if the only appointment people can get is with a PA, then take it. And if they PA can't help then make sure you fill out the Friends and Family Test feedback honestly and negatively! If they get enough negative feedback about PAs they will have to change the way they work.
Thanks I don't want A and E I am sure there are lots of good paS the one at surgery is rubbish can't refer can't prescribe doesn't listen. I have worked for nhs and Social Services all my life and interviewed staff so I know when someone is not up to the job. I have fed back about the PA. Current plan is to get rheumology and gp to agree who is doing what.
I'm in a similar position of having conditions that come under different 'pathways of care'. I spend hours waiting for phone calls back which then don't happen (staff shortages, staff illness, staff holidays, the consultant hasn't replied to the email yet).
I'm still waiting for a reply from Rheumatology from more than two weeks ago about how to reduce the steroids which I've been taking for vasculitis, PMR annd RA. I had advice which I followed. I had to increase them (because the rash reappeared and I couldn't dress myself) and then, after restarting the adalumimab, being able to reduce to 15mg. But what next? I'm not happy deciding this for myself!
I've also been seeing the Advanced Nurse Practitioner for treatment of diastolic heart failure., who is very cautiously increasing the ACE inhibitors. Fortunately, she is relatively accessible, although only on two and a half days a week. And I have to fit the blood tests every one to two weeks in between this.
I feel my whole life is being taken up with managing the illnesses and the delays get me down. It will be 10 months of hassle since this last flare up of problems and I'm getting more and more 'de-conditioned' stting in a chair with my feet elevated waiting for the phone to ring.
it’s very frustrating when you’re pin balled back and forth from one place to another and no joined up thinking. I so get your frustration and I think you’re right to try and get an assessment of who is responsible for what and however long it takes make an appointment to see an actual GP if the PA isn’t useful. Doesn’t matter how long it takes to get the appointment just keep trying. We all know there’s loads of struggles going on in the NHS. At the moment we are really having a major crisis with a family member but even though the wait is intolerable the care is still there even if an emergency still takes many hours to be able to help. Unfortunately you will probably have to be your own advocate and keep trying.
Does your surgery use the EConsult service. I find that good, you can get your point across with no interruptions. At the end it asks if you want a particular member of staff to deal with your query. You can also mention walk in centre say you need a neurology referal. I prefer this to phoning and trying to convince a receptionist I warrant an appointment. You may find you can do it through your nhs app, or the surgery’s website.
In my experience rheumatologists will deal with issuing medications that will alter the disease, pain management falls under the gps remit. You may also find gp or rheumatologist will refer you to the falls clinic, due to balance issues. They can then refer on to places like neurology if they deem that appropriate
Thanks I have emailed the practice manager she will be getting used to me ha as you say reception need convincing and don't take enough info. I see the rheumatology nurse also has written to GP asking to see me. So hopefully should move it on to whatever the issue is going on. I don't have that system Econsult.
The only thing I can add is to consider changing GP... After years of failures, the last being offered a flu jab appt whe I got Covid and needed anti-virals as I'm on Rituximab I finally moved to another practice and the difference is amazing. Despite mixups on meds/ prescriptions by reception / pharmacist It is still 100% improvement, so was well worth changing. Good luck !!
Thanks yes am considering changing GPs but think may be similar experience elsewhere bit random. I called today with same symptoms as last week when I rang and they listened and found appointment for this week. Different receptionist I did also say rhemy nurse and walk in centre had referred me back to them. Regarding vax rheumatology wrote to them advising which ones I needed I received none I sought flu one out myself full time job RA ha. Glad I am semi retired
NHS care is falling apart
Folic Acid ... what dose???
Starting Methotrexate. Any advice on when to have blood tests and take folic acid please?
