does all GP have no clue how to detail with this illness

[buffy12]

please help GP has no clue , on illness ?

[Nadine99]

They often don't know much about this disease, I think the trick is to find one that's interested enough to talk to listen and learn. I did this for my husband by asking our local doctors if anyone would like to take him on. One very open minded doctor responded and she speaks or emails husband's consultant when she needs to.

Change your GP even if it's within the same practice. Maybe talk to the Practice Manager and ask for their help in finding the right GP for you.

Happy GP hunting

[Ayla Volunteer]

This is so common a situation that it is depressing. What is even more worrying is that GPs often don't want to learn about vasculitis, even when they have a patient with the disease. I don't know how we can improve things, short of lobbying the teaching hospitals to include vasculitis in their curriculum and to offer refresher courses once a GP has taken on a vasculitis patient.

I would add that too many hospital specialists are also woefully lacking in knowledge, resulting in a situation where patients needing expert care, as well as reassurance, are being offered a service that is often patronising, inadequate and sometimes downright dangerous.

To end on a brighter note, perhaps the current stir of interest in rare diseases will improve matters, at least for the next generation. We can but hope. In the meantime, buffy12, learn all you can about your illness and become your own advocate. How about presenting your GP with the Vasculitis Route Map (requesting politely that they read it!).

[Susie_b in reply to Ayla]

Hear hear

[Hidden]

As Nadine has suggested I'd see if you can find a better educated GP.

It's also advisable to educate yourself with as much information about your condition as possible from our routemap, available from the Vasculitis UK website at vasculitis.org.uk/about/rou...

I'd also make sure every GP youcome into contact with is made aware of the routemap.

Health wishes.

[LynneJ Vasculitis UK Volunteer]

I took a copy of the Routemap to my surgery's Practice Manager and she was very grateful. Since then which ever GP I see have treated me a lot better.

[metalback]

I 've just taken the new leaflet to different GP who was very interested and says he will look for route map on website. It is annoying though when you know more about the disease and its symptoms than them. Thank goodness for the website.

[mg15]

I gave a Route Map to my GP and asked him to read it. I also gave to the district nurse a leaflet and asked her to find out about Vasculitis. I also organised a Route Map for my consultant. All were happy to have them and I felt a strong need for them to know more in order to support those with this condition. After all medicine like all else in life is a contiguous educational process. As long as your medical personal are happy to study the disease well then this is a great help. Good Luck!

[Regie79]

I don't ask my GP's anything relating to Vasculitis as they don't want to know! Speak to your specialist is normally what I get told.

Paul

[HiveMind in reply to Regie79]

Ditto!

[JimL]

I am lucky, my GP is interested and To help her I gave her a Route Map and give her our twice yearly magazine (after I have read it of course). However I always contact my consultant with any WG/GPA problem.

Jim

[Derek]

Likewise I have given a Route map to my GP and seemed interested enough to read it. However I would not want it to languish in the Practice Library so will speak to the practice manager to ensure it gets passed round to GPs and nurses. I gave one to my hospital Vasculitis Team and they have requested another, which is a great response. My oldest daughter is a community parctice nurse and would like one for the GPs she supports.Plus we have a dental practise and two other surgerys within a mile and will ask if they have one or wish to have one. I'll be asking Patricia for them in due course One further note, I shall be asking my vasculitis team to ensure other departments I've had to visit get to see the Route Map too.

[John_Mills Volunteer]

We have posted out 500 copies of the Route Map to date and I would say about 400 to GP's and Consultants. We are now about to have a 4th printing of the Route Map but this will be the updated version and will be called the second addition. It will include more types of Vasculitis and more updates including Vasculitis of the eyes..plus minor changes... if anyone would like a copy of the RM sending directly to their GP let me know please... I am afraid GP's are still not very clued up but it is improving... what makes John and I upset and angry is when a GP becomes obstructive in writing a referral to a consultant who does know about Vasculitis, especially for someone who is obviously very poorly. We collect all the stories we are told by patients and their relationship with their GP and sometimes their consultant at a local hospital. John can use these as evidence to help improve care for the patient with Vasculitis when he attends these various meetings in London and Birmingham.

You would not believe some of the comments some GPs have made to their patients with Vasculitis, but then on the other hand, sadly some people will have had experience of this.

We have just sent copies of the RM to a local hospital because they do not seem to know how to treat Vasculitis at all.....

[Regie79 in reply to John_Mills]

I remember in the first days of my diagnosis's that I felt confused and very much on my own, I think the awareness of Vasculitis is very important to promote, and give the thumbs up to the Vasculitis route map

I personally think support groups are the way forward: Giving GP practices information like the Vasculitis route map is a good idea, but I think that it would also be a good idea, for GP practices to inform their patients more of the local Vasculitis support group in their area – This was something I had look for myself (ok if you have the internet). As I live in south Kent (Romney Marsh) I was thinking about starting a support group, maybe in Ashford in Kent, as this fairly centralised. I haven't got a clue how to go about this and would like to know others thoughts on this (I am probably opening a tin of worms)?

I see my renal consultant locally (Kent & Canterbury) I asked him some time ago if he had many Vasculitis patients on his books, he says he does - so I’m sure it will not take long to gain some interest in a support group.

I would like to thank John and Susan for their efforts with this site, and the work they do for Vasculitis UK. Over the last five years I have viewed other Vasculitis/WG forums, and personally really like this site.

Paul

[LynneJ Vasculitis UK Volunteer]

Hi Paul

It would be brilliant if you started a group.

There is a page on the vasculitisuk website that gives a bit about starting the group

vasculitis.org.uk/about/sta...

I started the Yorkshire North Group recently and it went really well. The hardest part was finding a venue and speakers but then after that everything fell into place.

It depends on what type of group you want. Some just meet in a pub for a meal or just meet to chat, and some are more formal with speakers. This is the route I took and had to enlist the support of my Rheumatologist Nurse who gave a talk. It is also a bit more complicated but well worth it. If you would like to private message me with your e mail I can send you a list of things to remember that Pat Fearnside sent me to get me started.

If you want to see if anyone is interested why not post a new blog and put it on facebook. If you are not on facebook I could copy the blog and post it for you.

If I can be of any help please do contact me.

Lynne

[Regie79 in reply to LynneJ]

Hi Lynne, thank you for your reply!

I was toying with the idea at first of just getting people together so that they could just gossip and share their experiences - so a informal get-together really. I guess the whole exercise would be a pilot scheme, just to see what interest I could get from people. If it’s successful I would like to make plans for something that could happen more regularly. The pub and meal idea seems like a great Idea, thank you Lynne for the input.

My apologies’ for hijacking the thread, I know this is off topic.

Paul

[vivdunstan Volunteer]

My experience is that I've had to become the expert in my disease. My form of vasculitis (cerebral vasculitis) is particularly rare (1 in a million incidence), and my own form a particularly aggressive and unusual one even within that incidence. There's no way a GP at my practice could already be familiar with the wide variety of symptoms I have and be used to prescribing the cocktail of drugs (about 15 different ones on repeat prescription) I have to take.

At my previous practice the GP was not very interested in my case. I pretty much ignored her, and allowed the consultant to look after me. All the GP had to do was check for alarming monthly blood test results, and issue repeat prescriptions.

At my new practice, after I moved in April 2004, I was lucky to be assigned to a GP who was interested in my case, and has learnt about my form of vasculitis over the years since. This proved lucky because I had a huge relapse in May 2004, just weeks after introducing myself and saying I hoped he wouldn't have too much to deal with in my case. But he's been very supportive ever since. I also have another GP at the practice who is a backup option for me, who when I saw him said "You're a medical curiosity!" and was interested in learning about my form of the disease too.

But ultimately I'm the expert in my case and symptoms. And my consultant respects that too.

[braindamage]

Sadly, being in a large practice with an endlesss turnover of 'new' doctors, I can't remember the last time I saw the same doctor more than once.

[Hidden]

I am appalled and shocked by the huge amount of confusion that exists by professionals about Polymyalgia Rheumatica and Giant Cell Arteritis, both autoimmune illnesses which inflame blood vessels. Is PMR is a rheumatic condition or not, or a muscular condition, or related to GCA? When temporal arteritis is in remission (which doctors only seem concerned about because they are afraid of being sued when a patient loses their eye-sight), is the inflammation of the arteries elsewhere in the body and still active and should it therefore be ignored? Why are rheumatologists seeing patients if this is not a rheumatic but a dangerous potential for damage to arteries and vital organs? The consequences of poorly treated GCA could be an increased risk of stroke, heart attack, dementia, etc. Why is there so little preventative understanding? GCA and PMR patients are not getting necessary care and why is this? Frequently, doctors themselves refer to this as a complaint of ‘the elderly’ as though people in care homes with aching muscles are a nuisance if they complain about something for which there is no helpful treatment, however, many people, not yet at retirement age, still working, still caring for elderly parents and grandchildren, possibly caring for an unwell spouse, etc., are suffering and do need competent assistance to ease pain and disability AND prevent further serous forms of life long disability. These illnesses are known to cause anxiety and depression and they need responsible professional care. Professionals are paid, especially to attend to those who are in pain and disabled. Unfortunately, patients who are knowledgeable about their illness often create defensive reactions from doctors who don't know much and can't be bothered to spend 5 minutes looking it up.