Recomendation for doctors OT, PT etc.
Bioluminescence
Member Posts: 42
Sorry if I'm going to be posting a lot in the furture I just seem to have a million questions.
I do not feel I have received a good level of care during my diagnosis and after. Whilst my regular GP was great and referred me to rhuemtology at Hammersmith early on from there things were worse. My consultant at Hammersmith did blood tests and got my xrays and ultrsound of my hands and then confirmed inflammatory arthritis and put me on sulph. This was OK but when you give a 20 year old a diagnosis of a chronic disease surely you should offer a little more support. I mentioned I was depressed and she said of course I was but didn't recomend a referal for a counsellor. She gave me no infomation on physio therapists or OTs. Whenever I read books or info about arthritis I constantly hear of 'care packages' and 'you should talk to your OT' etc. as it all got a lot worse I went to a GP (unfortunately not my normal one) and asked about how I get a walking aids and could I be referred a physiotherapist. She looked at me like I was really stupid and said you buy walking sticks from the shop.... I just had thought there might be someone who would measure you for one and explain how to use it as not to do more damage. She refused to refer me to physiotherapist saying the one through the GP can't deal with RA and I should be resting at any rate. This is annoying because that physiotherapist perhaps could have referred me to one who could help or to an OT or something.
If it possible for me to change rhummy doctors at a different hospital? Preferably on the NHS. If so can anyone recommend one in West or central London? And am I entitled to a physiotherapist, OT, counselling etc etc. Its just so disheartening the lack of support I have recieved. Sometimes I find t hard to speak up in appointments as THEY are meant to be the professionals with a body of knowledge. My mum has been really angry that I'm not getting more help but she lives too far away to come ot appointments with me.
I do not feel I have received a good level of care during my diagnosis and after. Whilst my regular GP was great and referred me to rhuemtology at Hammersmith early on from there things were worse. My consultant at Hammersmith did blood tests and got my xrays and ultrsound of my hands and then confirmed inflammatory arthritis and put me on sulph. This was OK but when you give a 20 year old a diagnosis of a chronic disease surely you should offer a little more support. I mentioned I was depressed and she said of course I was but didn't recomend a referal for a counsellor. She gave me no infomation on physio therapists or OTs. Whenever I read books or info about arthritis I constantly hear of 'care packages' and 'you should talk to your OT' etc. as it all got a lot worse I went to a GP (unfortunately not my normal one) and asked about how I get a walking aids and could I be referred a physiotherapist. She looked at me like I was really stupid and said you buy walking sticks from the shop.... I just had thought there might be someone who would measure you for one and explain how to use it as not to do more damage. She refused to refer me to physiotherapist saying the one through the GP can't deal with RA and I should be resting at any rate. This is annoying because that physiotherapist perhaps could have referred me to one who could help or to an OT or something.
If it possible for me to change rhummy doctors at a different hospital? Preferably on the NHS. If so can anyone recommend one in West or central London? And am I entitled to a physiotherapist, OT, counselling etc etc. Its just so disheartening the lack of support I have recieved. Sometimes I find t hard to speak up in appointments as THEY are meant to be the professionals with a body of knowledge. My mum has been really angry that I'm not getting more help but she lives too far away to come ot appointments with me.
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Comments
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HiBio
You most certainly do not appear to be well looked after although initially your gp seemed to get things moving for you.
As I understand it you can self refer for physio and here is a link that may help you with this.
http://www.nhs.uk/Conditions/Physiotherapy/Pages/Accessing-physiotherapy.aspx
The second gp you saw was well out of order and dismissive which is not on. It is not thought a good idea to rest too much with any form of arthritis - it is beneficial to exercise and best to discuss this with a physio.
You can self refer for counselling in the Hammersmith area as I checked for you.
http://www.nhs.uk/Conditions/stress-anxiety-depression/Pages/free-therapy-or-counselling.aspx
It is a little quiet on the forum today but will pick up again once the holiday break is over.
You know you can always call the helplines and have a chat with them and the number is at the top of the page.
Elna xThe happiest people don't have the best of everything. They just make the best of everything.
If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.0 -
Ooh thank you so much. Not sure how I missed that helpline number either......
I think I will go back to my normal GP (the nicer one) one more time as she was a lot more sympathetic and wrote the report I needed extra times for exams.
Wish they would train some of these docs a bit of a better bedside manner. Feeling belittled by a professional is a terrible thing. I think I read somewhere that our cancer rates are worse than some other EU countries because British people get put off checking symptoms with doctors in case they're made to feel embarrassed and time wasting...
Thanks for finding out about self referral - I had no idea you could!0 -
Hello and welcome to the forum
Arthritis is so complex, but we all deserve the best treatment..like Elna says your GP was quick in getting you seen to..unlike mine was...but then you do seem to have been let down....saying that I had to ask for physio....there is one things I have learned off this forum and that is you have to speak up for yourself..or sometimes you get moved down the list.
Make a list of questions you have and see your GP, you can certainly ask for a new rheumy....like you say some of these consultant couldn't care less, it can be very hit and miss...you will notice on the forum how happy people are when they have had a good appointment....this shouldn't be...I do hope wish you well with it all xxLove
Barbara0 -
Absolutely no problems, pleased to try to help you.
A good idea to try to see the first GP. It seems to be luck of the draw with the medics as to their "bedside manner". I have learned from experience that some surgeons although excellent at their work often have no idea on how to show any kind of compassion. Perhaps that is why they become surgeons!
This is another link that may or may not be of use to you:
http://www.lbhf.gov.uk/Directory/Health_and_Social_Care/Disabilities/Occupational_therapy/14922_Occupational_Therapy.asp
Welcome to the forums by the way. You post as often as you wish. We are here to try to help and support.
Elna xThe happiest people don't have the best of everything. They just make the best of everything.
If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.0 -
Thanks, I went back to the GP and she was quite nice and she had noticed a big difference in me. She will refer me to a physio and an OT. She also started me on an anti-depressant. So that was a bit of a relief to be listened to and have something done.
I have found out I'm related to someone who was quite big in that field and was a consultant and he has been very kind giving me advice. What was really helpful is the advice (and I'm starting to hear this a lot) that we must really push to get what we want within the NHS as the system is slow. So I've rung the hospital with a message to try to bring forward my consultants appointment. As my situation has changed a lot since last visit. I think I might also ask the GP to be refereed to one of the consultants my relative worked with as a second opinion (I believe you are entitled to do this).
From talking to people I have become aware there is a lot of redtape and sometimes there can be an effective treatment but before they can try it they have to put you on several treatments which are less likely to work as different drugs are different prices, different risks and have been around for different lengths. Problem is that to dismiss the safer drugs it can be several months.0 -
Good for you, its right you do have to make yourself heard...I would never have rang my consultants secretary till I came on this forum....I do wish you well with future treatment xLove
Barbara0 -
Yeah I know, its mad. We must all come to learn that these appointments are not all set in stone! If things have changed make a fuss...
Also apparently you are entitled to go to any NHS hospital in the country problem is that the best time to make that request is right at the beginning when you're clueless / still reeling from the information there might be something serious.0 -
One of the greatest flaws in the NHS is this: it can't do everything for us, either at the drop of a hat or if we paitently wait. Your generation has been brought up in an instant world where things happen at the press of a button but now you are finding out that real life doesn't work that way.
If you want a stick then go and buy one. There's no secret to them, if you observe those who use them you will see that your hand needs to be just above your hip and you use it on the opposite side to the affected joint. It's there for balance and stability, not support. If I need help with something then I sort it for myself. That saves me a lot of hassle and bother and thus makes life easier which is what I need.
Your source of strength and support will be found in you but it won't come overnight. It takes time to develop your strategies for coping etc, keep reading threads on here and you will keep finding tips and hints from us old hands who have been messing about with this malarkey for years. There is only so much that the rheumatologists, GPs, OTs etc can do - their options are finite. The rest is down to us. You are joining that odd 'elite' who constantly see a doctor, take pills and potions but don't get better. Initially that is hard to get to grips with, especially for families and friends who equate pill-taking with getting better because that has been their experience. Check out The Spoon Theory and There's a Gorilla Living in my House - they explain the factors that affect us very well indeed.
You'll get there girl, we all do. DDHave you got the despatches? No, I always walk like this. Eddie Braben0 -
I very much like this 'there's a gorilla in my house' and will check out the spoon theory. I was wondering if you knew any books (serious or otherwise) that are good and talk about arthritis or living with physical illness or pain etc? I got a 'living with rheumatoid arthritis' sort of book and that's fine but there might be others or fiction which is good that addresses some of these issues.0
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The last thing you will find on my reading lists is anything to do with arthritis; despite its constant presence in my physical life I rather like getting away from it when I'm relaxing. I've read the AC leaflets and those produced by Arthritis Research and that's it. Everyone's experience of arthritis is unique and I realised quite early on (once I knew what was actually wrong with me) that the path I would forge could not be discovered by reading about the disease. I preferred then (and still do) to take life one day at a time because I never know how I am going to be feeling from day-to-day. I know I have PsA and OA, I understand the meds I take, I understand that it isn't going to go away so what else is there to think about? This is easy for me to say, however, as I am starting my seventeenth year - you are still very new to this and still in the stunned stage. Let that settle first, maybe use the internet but only on reliable sites such as here or NRAS. AC can send you their publications - they're available online too. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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Hi
Not sure about self referring to a physio {in this area anyway}
but you can definitely self refer to an OT so good luck
Love
Hileena0
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