Access to medical information

[Colaba]

Hello, I have moaned already rather a lot on your pages about the almost total lack of advice, access and information about RA and its associated problems. I last saw an RA consultant more than two years ago and have no access to my GP unless I fall ill - which would usually be for something else, since there seems to be no interactive professional relationship with the progress of a disease of which I shall - 'Die with, rather than of'.

I have had many blood tests but only recently learned, from this site, that I might have access fo their results. I don't suppose I would understand - so there might be need for access to medical professionals- back to square one.

I have been called to a medical meeting for the elderly and must go with all my prescribed medicines. I suspect I shall need to know what they are for, and what they do. Maybe they will want to know if they work, that will be difficult to determine separately, if at all.

It is an interesting experience this RA, not entirely amusing. Ironically the worst symptoms I enjoy are the pains in my buggered knees, that combine awkwardly with the weakness caused by RA, but are not caused by it. They will not be fixed, probably should not be. I am 85 and the wait, even if it were deemed justifiable, is at least 4 years.

Still, mustn't grumble,

Will Taylor

[KittyJ]

Have you thought about self referral to a physio? They should be able to help you get some strength back and be able to advise on exercises for your knees? Sadly in this day and age we have to be proactive and seek out ways to help ourselves other than going through our GP unless of course for a medical problem. If you start searching hopefully you will be surprised at what is out there to help you, have you had an OT visit to help with aids as this could put less pressure on your wife and help you to remain independent longer. I hope you find some solutions 🤗

[hazelcats]

All I can suggest is to write some short notes of what you want to ask. Tell them you do not feel adequately supported or informed. Sometimes I guess medical professionals assume we are ok unless we tell them.Also is there anyone who can go into the appt with you, to make notes, or almost 'act' on your behalf?

I do access my own GP and hospital records, I profess I do not understand all of them, but hope the drs will act if anything is drastically wrong ( as has happened this week with screwed thyroid bloods).

Again, can anyone help you do this with you? I am not very technically minded but a GP receptionist helped a bit.

I wish you well

[Runrig01]

if you speak with your surgery, I’m sure they’ll help you access whatever apps they use, where you can view your medical information, like hospital summaries and eat results. You usually need to show 2 forms of ID, one being a photo one such as passport or driving license.

I agree with Kitty re doing a self referral to physio, although waiting times are quite long. If you can afford it you could get a private physio, fairly quickly. I see one who charges £35. You can also contact Occupational Therapy who can SI a home assessment to provide aids. I had them after my stroke, and was provided with an electric pillow lifter, which basically sat he up in bed, as well as shower stool, kitchen stool and gadgets to make things easier. I eventually replaced the pillow lifter with an electric bed. Help us there with the health professionals, if you reach out and let them know you’re struggling.

[Gnarli]

I understand exactly your view on healthcare professionals. I am told little to nothing. In fact I only learned that I'd had pneumonia when I applied for travel insurance.

[Fra22-57]

you should be given an appointment yearly with RA .Some people get it every 6 mths,some sooner if rheumatologist needs to check you more.Depending what meds you are on blood tests should be done regular.

If I have anything wrong with me I am told I am complex as I have a lot of health conditions and whatever is wrong could be anything tied up with any.

I will say that you are never too old for treatment.I was surprised that my gynaecologist is going to perform a hysterectomy on me as previously others have said my RA etc would make things hard to repair n heal.She surprised me saying she’d done surgery on a 90 year old

I think you seem to have to chase for answers yourself with some doctors.Ask to see a health advisor at your gp who can explain things to you.I never understand my blood tests and was told that if they weren’t ok they would contact me

[cyberbarn]

you should have access to all your notes in the GP surgery, and that will include blood tests. Don't do yourself down though, they aren't that hard to understand. There are some very good websites that explain them, and the system that our surgery uses (Systmoneline) also has links to more information.

Do you know if there is a digital hub in your area? There is lots of support now especially for older people from the council and from Age UK to help support patients to have access to their medical records. The GP surgery should have a care navigator or social perscriber that could get you in touch with them. Ask at your meeting, it would be an ideal place to get that information on how you can get more support for accessing your medical notes. Or as it is officially known, the electronic health record.

[MistyDay]

Congratulations on wanting to know more about your condition and what your blood tests show. You are half way there. Be positive, proactive and think I am 85 years young not old. I am only a few years younger than you and I have suffered from RA for most of my life. Your post shows you are in pain and suffering. With the right medication, that pain can be less. I was put on Benepali 2 years ago. It has made a huge difference to me. My pain is reduced and I am happy again. I suggest you start by reading articles and books about RA, and what your blood tests mean.Make notes, to increase your confidence and ask the right questions.If you don't understand get a family member, friend or someone from your GP practice to help you. Phone the NRAS . They will help you too. If you ask the receptionist in the practice they should print out copies for you. The print out shows your blood test for a range of blood components, and alongside are the acceptable range. If out of range your GP should discuss this with you. If you are in pain you are ill So make that GP appointment. Ask to see a Rheumatology consultant ASAP as you need different medication for your RA. Life can be enjoyable at any age. Get help so you can enjoy the years ahead.

[Colaba in reply to MistyDay]

Misty Day - lovely name!

Thank you for your kind remarks. Actually my pains are not mostly from the RA but from two thoroughly buggered knees that might be treated in 4 years time if it could be arranged -scarcely cost effective!

The RA has weakened me greatly and, combined with the knees, makes walking over sloping or rough ground a bit tricky. On flattish stuff I can walk quickly with a stick. I can still drive long distances and my upper body works well enough to saw logs by hand, though I can no longer start a chainsaw.

My puzzlement is simply to do with the evident contact and information that many on this platform receive, and seems ideal. I have, effectively, none. I take many tablets, some of which have to do with blood thinning.

As an old, worn-out, man I probably shouldn't grumble. There are many more useful folk who obtain gross injustice from our deliberately worn out NHS.

I have just returned from France, where they have citizens rather than subjects. That may seem no more than a linguistic difference. However they know, demand, and, to a great degree expect, and receive, effective, thoughtful treatment.

Thank you for your letter.

Will

[MistyDay in reply to Colaba]

I do understand where you are coming from with painful knees. My husband has bad osteoarthritis of the knees, and needs knee replacements in both. His quality of life is badly affected by the pain and difficulty of movement, so you have my sympathy and understanding. He drives his car and he is always doing jobs around the house but walking is painful for him. They are reluctant to operate on oldies, and do highlight the fear of complications to a painful degree. My husband cannot decide what to do. I say go for it, but it is his decision. Sometimes, if you can afford it a private consultation might help, or give you clarity of a way forward.The NHS should arrange physio for you too,which may help. I appreciate that the older we are, the less we are a priority. I wish you all the best, and I hope you get some treatment that eases your pain. Good luck.