OT referral

Slosh

One of the actions from my neuro assessment was for my GP to refer me to Occupational therapy . I had a phone call from them early January, did a telephone assessment and was told I would hear in a werk or two.
As I hadn't heard back I phoned up again. Spoke to a really nice therapist who confirmed thry had my referral and assessment but there was quite a waiting list, when I asked how long he said I could be waiting a YEAR for an appointment!

He asked if was in a position to buy some equipment myself and when I said I was gave me some suggestions. I'm obviously happy I'm not an urgent case for their support, and I'm fortunate I can afford to buy what he reccomended but frustrated as the provision of equipment was only part of the reason for the referral, the other was for advice on managing fatigue and pacing myself at work.

Are waits of this length usual?

dibdab

That's dire, I think here abouts (West Midlands) the wait is several weeks. On the plus side I found them really helpful with recommending equipment, and giving me a variety of wrist, thumb and hand splints to use according to which bit hurts most, and pressure gloves to deal with swelling and try and reduce deformity as a result. They can also loan equipment for various problems. Once in the system I can self refer for extra help, the OT is a dedicated rheumatology person so has lots of experience to draw on.

I wonder where your OT is based? If it's hospital based could the PALS organisation advise on ways to speed up access?

Hope you're ok, just one more day till the weekend!

Deb xx

Slosh

It's not hospital based but linked to Adult Social Services, it could be because I have been referred by my GP rather than by the hospital who might have referred me to a service based there. Luckily I can afford what they suggested over the phone as there was nothing too pricey though I might also look into a better chair. I have an orths appointment next month so I might mention it then.
One day to go to half-term and I'm starting with a massage!

Mary2014

Hi Slosh,
I got referred by rheumatolagist and I had to wait about six months to see OT. She is very helpful and understanding, she has given me some light weight cutlery. Gloves to help with swelling, hand splints to wear for short periods at work when needed. Also having handrail and raised toilet seat fitted. She has given me leaflets related to working with arthritis. I hope your appointment come through soon.
Mary

stickywicket

Crikey, that is a long time! I think I waited 2 or 3 months. They provide my bath lift and raised loo seat. However I always buy my own regular aids eg grabbers, sock aids (see below :roll: ) washing sticks, combs etc.

Slosh

I've already bought things like a sock aid, zipper pull, electric jar opener and a shower board. From my phone assessment I am going to buy a perching stool, toliet frame and a grab rail for my bed to make it easier to get out of. I'm lucky in that I don't need more urgent assessment but it's the advice on managing fatigue and pacing work that I was also looking for. I was just shocked at how long the wait was.

stickywicket

Do OTs do that? I'm not saying they don't: I've just not used them in that way.

bimble

Our local physio practice has an OT as well. I paid £40 for a 1hour consultation at which I was given advice on aids and exercise. She also made me 2 sets of hand splints which were extra, of course, but were at cost price. It was worth it for me as I'm not severely affected, just hands (so far!), so wouldn't have been near the top of any waiting list!

Sonia50

Hi all
Wow, I didn't realise the waiting times for so bad for some. I saw the OT yesterday after only waiting 3 weeks! ... my GP referred me. I live in Derbyshire and have been very well supported by all so far. The OT visit was very informative - she gave me some good tips for both work and home and has arranged for some aids for me.... I did come away with food for thought as I was told I'm overdoing it in my job... not easy to hear but don't know what the alternative would be?
I hope all you lovely people get your OT appointment as quickly.


Sonia x

trobbo

I was referred to OT on 24 Dec 2014 and got my appointment for 22 Jan 2015 so just under a month - I live in South Yorkshire area.
I found the visit to be helpful and I came away with a pair of fingerless pressure gloves that seemed to alleviate the pain from my RA for a while.

I'm surprised that some of the reported waiting times for an appointment are so long.
It did strike me though - after my visit - that in nearly 30 years of having Rheumatoid Arthritis it was the first referral I'd had.

So perhaps that's the reason for them not being as busy - less frequent referrals.

Slosh

It's amazing how much things vary across the country. Here it comes under adult social care and is also a self referral service so I don't kniwif that slows things up. I have an OT appointment mid March so if I haven't heard by then I will ask if it can bechased up. It's a similar thing with my referral for counselling. Took a week to get through on the number I was given, phone assessment. Called me back 10 days later to say yes, I would benefit from counselling and gave me the number of another service that could provide this, again on a self referral basis. Called them, left my contact details and got sent yet another form to fill in, which I have to return!

dreamdaisy

I don't think it that surprising, Slosh: you live in a densely-populated part of the UK so it's logical that there will be delays in accessing services. We know we are individuals but so are all the other people waiting to use services which are already stretched, possibly underfunded and under-staffed to boot. I've been trying to remember how long it took for the OT to come to my house and assess matters (this was many years ago now). I think it was around a fortnight between my call to them to book an appointment and her arrival. She provided a raised toilet seat (known as the Pork Pie because it was made by Mowbray ) and arranged for new handrails to be installed on both flights of stairs. Everything else I have needed has been bought by either me, my late Ma or The Spouse - I am a fortunate woman. (I never thought I'd type that phrase about arthritic matters! ) DD

Slosh

You're right DD and I'm also aware that I'm lucky in that I'm not a more urgent case. The bits that were recommended are being delivered tomorrow, and I already have handrails on either sides of the stairs.

hileena111

Hi
I'm in the North East and you can self refer.....its not very long before you get an appointment.
Here it is just about equipment etc
I don't think they talk about fatigue /pacing or anything like that
I think for that you would be referred to a Pain Clinic.
I hope you hear something soon
Love
Hileena

Slosh

It was the neurologist I saw that said they would be able to advise me on that. Just have to wait and see.

dreamdaisy

Always bear in mind that hospital specialists won't necessarily know what other specialisms may or may not cover. OT is about the practicalities of life and making that easier - the rest of it is up to us and those who employ us and legislation is in place to help with that. Pacing ourselves is not easy, especially when one has been used to living life at full tilt, but it is an essential skill to master.

I hope you find your new pieces of equipment useful! DD

Slosh

As ever wise wotds DD. I think my daughter hit the nail on the head when she pointed out to me there is no magic bullet or formula to "cure" fatigue and I need to accept that and find my own way to adapt and deal with it.

dreamdaisy

Thank you for the compliment! Your girl is absolutely right, fatigue is part-and-parcel of our lives but having always had slothful habits I didn't find it that hard to slow down.

We have to listen to our bodies and obey what they're telling us. As Sticky once said there's is little point in fretting about what cannot be altered - we have what we have and we have to live with it. There's no doubt about it our diseases are, from time to time, demanding lodgers but we can accommodate them to fit in with our needs, not theirs. DD

Starburst

I've never heard of such a long wait. :shock: In my team, there's a mix of social workers and OTs, we do have a waiting list and it is prioritised according to need but, still...! OTs are trained to assist with things like fatigue management but in the hustle bustle of the NHS and/or social services, it gets lost and major equipment (stair lifts and ramps etc) gets prioritised.

Slosh

Going to see if my GP can try and speed it up and will also mention it when I have my next orths appointment next month

m4r14j

It really does depend on where your based, I'm in London too and what the council spends on services in your area and how they divide budgets between hospital and social services. I think what they provide is different based on budgets too. but yes they have had massive budget cutbacks all of them and doesn't it show?!!!

for instance minimum wait for rheumy consultant 6 months (so to get all my tests done and get a diagnosis FINALLY after many years of suffering took almost 2 years for no other reason than having lengthy waits for each test or appt

on the other hand it was my hand therapist at hospital did the referral to social services she also was the one gave me splints and such but lengthy waits mean i have had almost 4 months now for my next visit to get some custom splints measured up which i guess will arrive in time for xmas!

4 weeks after referal i got a phone call from social services to discuss things; i WANTED a social worker as i wanted to find out if i could get a transfer on medical grounds - that being i'm stuck in a 3rd floor flat with no lift and my knees cant do stairs now for 4 months. I got told that in my area it's up to me to find a tenant - tenant swap! yup because i'm sure the council hands out ground floor flats like cookies? my understanding was i couldn't get a ground floor flat many years ago because i wasn't disabled enough (ie. had no diagnosis) that's when i got given a flat i knew was not suitable long term but hey ho... I also got told i wouldn't qualify for the shopping service because even though i have reduced mobility i'm not over 60yrs which is fine as i do shopping online anyway. Oh and finally i'm guessing this is why wait times are so short in my area because the phone woman also told me there is a time limit of having a social / OT worker for 4 weeks then your dumped out of the system and have to refer again?! :shock: :?

anyway the following week i was seen by OT - who wanted to give me bits and bobs and grab rails! she was a very lovely lady but i was alarmed when the first thing she said to me was "so i don't know anything about PsA, i've never heard of that before, what is it and how does it affect you" surely a quick google before arriving? she also INSISTED on seeing me 9.15am where i'm sure all of us know how great a time of day that is!!!! it was originally 9am but i kept trying to tell her i am very stiff and pained in mornings couldn't it be afternoon and so she said 9.15 :? anyway the long & short is i've been given a few other things & the lady did say she would see if she could find someone in the office that might give some advise on housing issues and i'll see her next week to get that info (i hope) and be signed off.

good luck with your OT! squeaky wheel and all that - try making a fuss!

Slosh

It is impossible for councils to maintain levels of service when costs increase each year and they are not allowed to increase the council tax! In my area they ask residents what areas they want the council to focus on, and each year keeping streets clean/rubbish collection seems to come top! I must be one of the few who always goes for social care as the priority area.

To cap it all my MP , and I didn't vote for him is a certain Ian Duncan Smith!

m4r14j

Hi Slosh!

I KNOW WHERE YOU LIVE

by bro-in-law also has Ian Duncan Smith as MP, he wrote him about a year ago - to try and petition this thing where they are trying to take widowers allowance away from people after a year of partners passing away to save money. He was obviously very upset about this, it isn't much money either, but since my sister died 2 1/2 years ago he is a single dad of 2 and has to spend lots on childcare and after school clubs especially as he works long hours into the late nights so he can still work to put food on the table and pay the mortgage etc. I think it's disgusting! my sister died at 45years old - and she'll never get her pension that she paid in NI so the least the state can do about that is a little bit of extra money each week to compensate for the wages she is not bringing home, for the food and clothes she would have provided her kids with! the money is only until the kids are 18 anyway!

I would love to write my opinions of IDS and the tories but not sure its allowed in forum

FYI bro-in-law never got a reply!

RED MARIA

Starburst

I work in a local authority that borders you and we are experiencing cuts to social care but I happen to know that your area is particularly struggling at the moment.

Slosh

I'm not surprised Starburst. Even when I was working in this authority as an Inclusion Manager a few years ago cuts were being made in all support services, education, health and social services and I know some of the excellent professionals I worked with left to work in other areas due to their workload.