Long wait after wheelchair referral by GP

[Poweruser]

At the end of June my GP referred me to my local Wheelchair Service at the local Community Hospital after a deterioration in safe mobility. I was given an expectation that an appointment would be forthcoming within 6 weeks and that a chair, together with some minor structural modifications to my home would follow soon afterwards. When nothing had happened by mid-August I called the hospital and was told I hadn't been allocated an appointment yet and I'd have to wait until one was allocated. I asked how long it was likely to take - only to be told very bluntly they weren't going to tell me. I called the GP surgery and asked one of the secretaries to call the hospital to try to determine the length of the backlog - it turns out that in August they are seeing people referred in early May!! This begins to look like a side effect of target setting where they are required to respond within 18 weeks. Meanwhile I'm running the risk of more broken bones after falls and bangs while they manage their list.

Do other people have similar experiences or am I a victim of a post code lottery ?

[cocoa]

If you are in the UK, you could try phoning the Ataxia UK helpline.

I hope you are successful because safety is important.

Best wishes to you

[neta]

Sounds bad. I don't live in the UK but long waits are a world wide problem. Keep bugging. Maybe there's a TV/radio program or newspaper which can help. N

[Pheobe13]

My partner has been waiting since 2016 last September to be exact he doesn't walk now we have a wheel chair and a shower chair and a motor scooter just had a hoist fitted every gadget you can think of to keep him independent as possible they have been to house to measure doors for sizes of electric chair in June of this year but still no news ! My partner now has MSA C which is very bad so I know how frustrating it is for you but our OT is great and so is our palitive nurse we would not have got half the stuff without these people on board !

[Staggy1]

How long have you had ataxia? I'm going to need a wheelchair eventually but can just manage to walk about and get the occasional bruise and graze. X

[sheild]

There was a news item on the various success rates patients had in getting a wheelchair from their Wheelchair services, it was out there about a month ago. Cornwall and Worcestershire were the worst whereas Norfolk were the most generous, and you could roll over your area to see the rate by CCG. It is frustrating, I was re-assessed earlier this year and was put at 'sufficient risk' to need a wheelchair and then told they didn't have one for me. End of. All they gave me were some badly reproduced downloads of what they thought were suitable wheelchairs for me to buy...

[12daisy]

I have a manual wheelchair at the moment and have been on the waiting list for a electric one for 11months.

[JPsMumtoo]

My son waited from December until July for his appointment. We are in Hampshire... He nearly didn't get a chair after all the wait as he doesn't use it in the house... But luckily the ot had ticked the box which said he needs it most of the day so he has one. Good luck with your chair x

[Cuds]

Hi - all wheelchair services in Britain have undergone reviews with their commissioning bodies for each country. These have been extensive consultative reviews (in scotland, wales and ireland at least) . A few years ago NHS England brought people in to review and set targets for England - again and the national wheelchair manager's forum (which you can access online) had concerns about this. About 10 years ago the department of health had English services complete a large piece of work to improve and align services e.g. eligability criteria amd referral pathways under the "modernisation agency" project but clearly this has not been sufficient. That is why the wheelchair leadership alliance was formed in 2015 led by Tanni Grey Thompson. It might be worth contacting them for advice and support in getting your needs met. Their website is rightwheelchair.org.uk

On a different note, children who need wheelchairs come under the national standards framework (NSF) for assessment and provision and if they are not seen in 6 weeks from referral to assessment they have breached and commissioners for that service should be informed.

I will be at this year's ataxia conference in Stansted if you want to discuss this further - or send me your contact details and I will get back to you.

Good luck!

[TWITTERING in reply to Cuds]

Where is the conference in Stansted,as my son has problems telling the doctors and hospital, just how much pain he is in, so we are trying to get as much information together to get more support, and a wheel chair, as a buggy caused him problems as he tipped it up on a couple of occassions

I can be contacted on

01243 672052,

or Email,

[e-mail]

Thank you.

[Cuds in reply to TWITTERING]

Hi i will email you all the details later today - I'm out all day so it will be early evening!

[Veteran250]

Hi...... A suggestion..... contact your local Red Cross..... they have a wheelchair loan service, you can only ask. 😀

[Veteran250 in reply to Veteran250]

If you or your partner/husband/wife etc served in the british armed services in the past, Goggle SSAFA(SoldierSailorAirForceAssociation) and ask for help.....I am a RAF Veteran and asked for help..... the RAF benevolent Fund gave me an electric powerchair, and my local council laid a ramp from my front gate to my back garden in order to charge the , don't be embarrassed about asking for help, if you served, you are entitled.

Don.