NHS Powered Wheelchair

Paullfc70
Paullfc70 Online Community Member Posts: 2 Listener
in Everyday life

Hi, I wonder if anybody can help me.

Having had ALS/MND for over 37 years, I now have to use a powered wheelchair via chin control. I currently have a Quickie Q300 powered wheelchair provided by wheelchair services, which I have had for the past five years.

Due to having a progressive muscle weakening illness, my chair has now become very uncomfortable. On Monday 12th, I had an assessment by wheelchair services to see if I could get a new chair, especially one that has electric leg raisers, a better supporting backrest as I’m more slouched, lights so I can venture outside in the evenings and a chair that is faster than the one I currently have which is painful slow especially when slightly reclined when I have to do due to my back and kneck pain, another issue is range, the chair’s range is very poor meaning that I am very limited to where I can travel.

Regarding the leg raises, after just 30-40 minutes sitting in my chair, my legs start to hurt. The only way I can relieve the pain is to ask my carer to lift my leg up straight for a couple of minutes or rest it on a chair, etc.

On Monday, when I had an assessment, the lady who came was very abrupt; she had obviously made up her mind before even coming through my door. My mother had passed away the night before, so I was in no mood to argue with her.

She said that the NHS does not provide wheelchairs with leg raises, she then said that I should not be sat in my chair for longer than 2 hours, I explained that I cannot stand or transfer without hoists and that I do not receive 24hr care, also if I’m going out anywhere then you can’t do much in 2 hours especially when you include travelling etc. R

Regarding lights & the seat back then that could be fitted to the existing chair. I explained that I wanted a chair that would suit me for the coming years and one that I could configure as my condition slowly changes, also I wanted one that was faster. The chairs that I am most interested in are the Permobil M5 & Quickie Q500 or Q700.

The lady said that if I wanted another chair, then I should contact the MND Association, which may provide a grant. I don’t want to do this as it’s a charity and I believe that the money raised by the public for this charity should not be used for something that I have, according to NHS Continuing Care, a legal right to access.

Today, I was reading about the NHS personal wheelchair budget for people who receive NHS Continuing Care & certain benefits. This allows the person to buy their own choice of wheelchair; apparently, I have a legal right to access this.

Has anyone else experienced similar issues with wheelchair services? Have you been able to choose a powered chair of your choice, and how much were you allowed? Did anyone get electric leg raises with the chair?

Please note that the NHS Personnel Budget scheme is different from the NHS Wheelchair Voucher scheme.

Thank you, Paul.

Comments

  • Rachel_Scope
    Rachel_Scope Posts: 2,619 Scope Online Community Coordinator

    Hi @Paullfc70 and welcome to the community. I'm so sorry for the loss of your mum, how are you coping with that? Do you have any support?

    I don't have any experience of using a wheelchair but I'll tag our Cerebral Palsy team who will know more about it @Richard_Scope @SaraC_Scope @Lucy_Scope.

  • Paullfc70
    Paullfc70 Online Community Member Posts: 2 Listener

    Thank you, Rachel. Yes, I'm fine. It became a relief in the end as she has been in a care home following a stroke, it was still upsetting though, I'm just glad she is no longer suffering x

  • Richard_Scope
    Richard_Scope Posts: 3,869 Cerebral Palsy Network

    Hi @Paullfc70

    I have had many dealings with Wheelchair Services over the years. All interactions have been frustrating to say the least.

    The NHS voucher scheme offers £400 towards a manual wheelchair. I would hope it would be more for a powerchair.

    You should be entitled to the NHS Personal Health Budget if you receive Continuing Health Care. It states that the budget can be used to manage equipment.

    You would need to be assessed so that the amount of funding you might need can be looked at. To begin the process, you or somebody supporting you would need to contact your local Integrated Care Board (ICB).

    You can find your local ICB here

    I hope you have the success you deserve.

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 375 Empowering

    @Paullfc70

    I'm sorry to hear about the loss of your Mum. That must have been hard to have the assessment the day after she had died. I'm wondering if you could request a new referral explaining your circumstances and mention you didn't feel heard by the person who carried out the initial assessment.

    I don't use a wheelchair but I've been reading about the scheme you mentioned. The MND charity have a booklet about accessing aids and wheelchairs as the condition progresses and changes. MND Wheelchair Information They recognise the importance of having the correct support and independence.

    It might be worth contacting the MND helpline for additional advice and support. I'm sure they have advised people who've had similar experiences.

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