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Re: NHS Wheelchair Provision |
| Hi, My daughter is 3 yrs old with Type 2 SMA, Our NHS Wheelchair Service told us they would not consider her for a wheelchair until she was 5 yrs old. We therefore fund raise money and on her 2yr birthday got her an indoor/outdoor wheelchair. I then was told we could get a maintance voucher. Because we had then funded her chair independantly she was not in titled to the voucher. After 1yr our physio manage to get wheelchair services to provide us with a manual chair. PANTs!! Why do we pay taxes and how can you stop a child having their independance!. All a can say is do'nt give up keep fighting. There are charities that can help finance chairs, Whizz Kids, Cauldwell Trust etc.. |
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Re: Re: NHS Wheelchair Provision |
| They key here is to keep fighting and facilitating conversations between all the parties. I've just secured funding for a Permobil for my daughter (15) after 18 months on the basis of clinical and lifestyle needs. It's worth pointing out that if you are statemented for mainsteam school it will be very difficult for your daughter to integrate from nursery into primary if she hasn't got an up/down mechanism or indoor/outdoor power chair. Make sure your statement covers playtime/lunchtimes/sports days/school trips. This then gives you evidence to support your daughter's "lifestyle" needs when you fight your corner with wheelchair services. If mainstream school is the policy then the kids needs powerchairs that integrate them at home and school and your LEA may agree to fund an element of the chair. Whizzkids and other charities will also joint fund.Hope this is useful. |
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Re: NHS Wheelchair Provision |
Not responsible for vertical? Unbelievable!
Can I suggest, if you haven't already, getting in touch with the JT office as I wouldn't be surprised if they have helped parents fight this battle before. |
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Re: NHS Wheelchair Provision |
| Our PCT gave a voucher for £1100 - we went through our wheelchair clinic and they agreed that their wheelchair wouldnt give our son the functionality and independence another powered chair would. Theirs cost £2100 so a voucher saved them money. They arranged for companies (we chose) to come to our house for review and then gave us a letter agreeing our choice which was important as all charities asked for a recommendation with our application. Then we applied to a number of charities to speed up the funding - we reasoned we could get £1000 from a number of charities rather than wait 12 months too receive full payment from one and that worked for us. The NHS in our view will not fully fund a £8k or £10k chair however they should provide some payment towards the cost in the form of a voucher sadly do not know of any family that has had full payment for a powered wheel chair. Good luck. Plus all in all it took 3 months too raise £10k we needed so its not hopeless. |
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| Sun Sep 10, 2006 12:46 pm |
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Re: NHS Wheelchair Provision |
As we know, to get anything from the Government and its Departments will always be a tough fight. Whats important, is that your child gets the right equipment and support (as well as you) when it is needed and not when the NHS & Social Services feel they can provide it.
If you have not already done so, contact your local Social Services and ask for an assesmsnt under the 'National Service Framework for Long Term Conditions' which should look at the needs of you and your son. Social Services & the NHS have an obligation under 'Section 2' of the 'Chronically Sick and Disabled Persons Act 1970'. If they start to fob you off, which i believe they will, then request a independant investigation via your Local Council Complaints Officer. Be prepared to fight your corner. Will be interested to know what happens!! Good Luck. |
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| Fri Sep 15, 2006 12:13 pm |
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Re: NHS Wheelchair Provision |
When my daughter was 2 we had a similar discussion with wheelchair services.
however whizzkidz became involved and undertook a joint assessment - the local services then were encouraged to and agreed to a joint funding agreement.
as we would have had to wait for whizz kidz funding we set about it ourselves. the local services funded the cost that they would have spent on a chair over 5 years
and we fundraised the rest, the local services are responsible for the clinical changes to the chair e.g seat size etc and we maintain and service it. |
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