Help Charlotte Get Wheels for Life
Donation protected
Hi, my name is Charlotte. I am 28 years old and I have a progressive neuromuscular disease. This means that my muscles are extremely weak and this strength reduces as time passes.
I urgently need £6800 for hand controls and £6600 for a wheelchair to keep me mobile, working, part of society, and also to reduce pain and discomfort. Help me reach this goal!
My neuromuscular disease means that I am unable to do a lot of the things I would love to. Because of my disease, I need to use a wheelchair, have swallowing difficulties, respiratory muscle weakness, have muscle twitching/spasms, have loss of muscle control and general muscle weakness and pain.
In addition to neuromuscular disease, I have numerous conditions including dysautonomia, asthma, trigeminal neuralgia, ASD, and chronic pain etc.
Until 4 years ago, I was able to walk albeit with pain and other symptoms. I have had problems since childhood but the last 4 years are when my condition really progressed. I went from walking fine; to crutches, to a manual wheelchair, to a wheelchair with power assist now to a chair that is electric.
I adapted to how my life had changed pretty well, I got a wheelchair, and accessible car and adapted the home. But now the strength in my upper body is affected everything needs changing again. I need a new wheelchair to support me due to the muscle weakness, and new hand controls so I can continue driving with very weak upper body strength.
My condition is progressive and as such, I do not know what the future holds, what will deteriorate next?? Every day is precious, I do not want to spend them stuck in bed unable to go out as I do not have a suitable wheelchair or car adaptation. Please Donate!
My conditions mean I take a lot of medications and have a lot of therapies to keep my body going as well as it can for as long as it can.
My Current Wheelchair:
I desperately need £6600 in funds to replace my wheelchair. The wheelchair above is suitable for an active user e.g. only weakness in legs and not requiring postural support (special seating). I am now unable to sit well in this chair, it causes severe pain, pressure sores, spasms and as such limits my mobility.
My current hand controls!
These are no longer suitable as I do not have the strength/movement to turn the wheel despite it been lightened. The brake is not electronic and takes a lot of force (to me) to push and the accelerator is difficult due to reduced movement in my hand.
Hand controls I need!
These are the much needed Paravan Space Drive Hand Controls! I need to raise £6800 towards these, the other £25K has been sourced! The 0% effort of these controls and the fact they are re-programmable means they can be used throughout the progression of my illness.
HOW YOU CAN HELP !!!!!
To help reach the target please Donate! Anything you can give is appreciated be it £1.00 or a £100. If 1,340 people gave £10.00 I would reach my target - just to give an idea.
I know it is a lot to ask, it is difficult to Donate when times are tough. I have always given to charity, to people in need thinking if I ever need help someone will help me. I was reluctant to ask but please if you can please Help - Donate!
Can't Donate, I completely understand. Did you know by sharing this fundraiser on twitter, facebook, Instagram and many more social media networks you could help direct donations.
If you were really keen to help you could do something sponsored on my behalf. A skydive, bakesale, bag pack etc. Personally, I would love to skydive but everywhere refuses me.
Want to know a bit more? Want to know why people like myself in the UK need to fundraise for wheelchairs and vehicle adaptations? - Read On!
Wheelchair Service - Q & A
Q- I thought wheelchairs were NHS funded?
A - Wheelchairs are not completely NHS funded. The NHS is amazing but it is stretched leaving people to purchase a chair themselves or be given an inappropriate chair or a voucher towards a wheelchair from a private dealer.
Q- Why do you not get a suitable chair from the NHS?
A - The wheelchairs that the NHS provide have to fall within a budget. Many wheelchair services have contracts with companies to keep the price down but as we know 1 size does not fit all.
Q - What is the voucher scheme?
A - When a wheelchair does not meet needs, the NHS offer a 'Voucher Scheme'. This offers people money towards the purchase of a chair privately but it normally is minimal sums e.g. £400 for a chair costing £4000.
Q - Why do people need new chairs when they have one?
A - People are given a chair for 5 years, they expect a chair may last that long then be replaced. However, people have progressive diseases, like mine. Some people may change body shape, spinal deformity and other problems can occur.
In summary, wheelchair service is a great thing and they help many people. But the more complex your disability and wheelchair the harder it is for them to provide. I know many people seeking funds for chairs at £20K because the NHS does not have the money. Yet without our wheelchairs, we can not go to work, school, university and be part of society.
Motability - Q&A
Q- Motability give disabled people a car for free?
A - in one word - NO. Disabled people assessed under DLA or now PIP are given a mobility entitlement they trade this into Motability for a car. For many people who do not use a wheelchair or need adaptations they do get a Car for their PIP money, however, advance payments can be required.
Q - What is an advance payment?
A - Advance payments are what people on the Motability scheme pay to receive the lease hire vehicle, it is extra to their monthly PIP they sign over.
Q - How much is the advance payment on a car?
A - Advance payments for a standard car (which I can not use) start from £0 to £2000, this is to give people a choice of car e.g. Vauxhall, BMW, Merc.
Q - How much is the advance payment on a wheelchair accessible vehicle?
A- Advance payments for a Wheelchair Accessible vehicle that is an internal transfer or driver solution start from £10,595 up to £32,495. See the difference.
Q - Do you have to pay for adaptations?
A - Yes adaptations are extra to the advance payments quoted on Motability's website. Some are free known as 'Motability managed'. Others like mine for the more severely disabled are not and cost £30,000+.
Q - Can you get a grant for a car?
A - Motability do offer Grants, the criteria for these differ dependent on a wheelchair vehicle or normal car. For a normal car, it is only income based e.g. benefits.
For a drive from wheelchair vehicle, it is based on income so benefits you receive and you must be working full-time, be in education or several other strict criteria. If you have any other adults in your house they must pay towards your adaptation even if it is your own children aged 18+, any savings anyone else has that are not yours are taken into account. Therefore few people get these grants.
It has taken well over a year to get Motability to finally issue a Grant to me for £25,000.
In summary, Motability is excellent if you do not need an adapted car, or want basic free hand controls. If you need a wheelchair accessible vehicle that you drive yourself, the scheme can often seem lacking with no hire car when yours is off the road, 9-12 month lead times on vehicles and £70K+ advance payments.
Thank you for reading my fundraising campaign! I hope you take the time to Donate and Share!
I urgently need £6800 for hand controls and £6600 for a wheelchair to keep me mobile, working, part of society, and also to reduce pain and discomfort. Help me reach this goal!
My neuromuscular disease means that I am unable to do a lot of the things I would love to. Because of my disease, I need to use a wheelchair, have swallowing difficulties, respiratory muscle weakness, have muscle twitching/spasms, have loss of muscle control and general muscle weakness and pain.
In addition to neuromuscular disease, I have numerous conditions including dysautonomia, asthma, trigeminal neuralgia, ASD, and chronic pain etc.
Until 4 years ago, I was able to walk albeit with pain and other symptoms. I have had problems since childhood but the last 4 years are when my condition really progressed. I went from walking fine; to crutches, to a manual wheelchair, to a wheelchair with power assist now to a chair that is electric.
I adapted to how my life had changed pretty well, I got a wheelchair, and accessible car and adapted the home. But now the strength in my upper body is affected everything needs changing again. I need a new wheelchair to support me due to the muscle weakness, and new hand controls so I can continue driving with very weak upper body strength.
My condition is progressive and as such, I do not know what the future holds, what will deteriorate next?? Every day is precious, I do not want to spend them stuck in bed unable to go out as I do not have a suitable wheelchair or car adaptation. Please Donate!
My conditions mean I take a lot of medications and have a lot of therapies to keep my body going as well as it can for as long as it can.
My Current Wheelchair:
I desperately need £6600 in funds to replace my wheelchair. The wheelchair above is suitable for an active user e.g. only weakness in legs and not requiring postural support (special seating). I am now unable to sit well in this chair, it causes severe pain, pressure sores, spasms and as such limits my mobility.
My current hand controls!
These are no longer suitable as I do not have the strength/movement to turn the wheel despite it been lightened. The brake is not electronic and takes a lot of force (to me) to push and the accelerator is difficult due to reduced movement in my hand.
Hand controls I need!
These are the much needed Paravan Space Drive Hand Controls! I need to raise £6800 towards these, the other £25K has been sourced! The 0% effort of these controls and the fact they are re-programmable means they can be used throughout the progression of my illness.
HOW YOU CAN HELP !!!!!
To help reach the target please Donate! Anything you can give is appreciated be it £1.00 or a £100. If 1,340 people gave £10.00 I would reach my target - just to give an idea.
I know it is a lot to ask, it is difficult to Donate when times are tough. I have always given to charity, to people in need thinking if I ever need help someone will help me. I was reluctant to ask but please if you can please Help - Donate!
Can't Donate, I completely understand. Did you know by sharing this fundraiser on twitter, facebook, Instagram and many more social media networks you could help direct donations.
If you were really keen to help you could do something sponsored on my behalf. A skydive, bakesale, bag pack etc. Personally, I would love to skydive but everywhere refuses me.
Want to know a bit more? Want to know why people like myself in the UK need to fundraise for wheelchairs and vehicle adaptations? - Read On!
Wheelchair Service - Q & A
Q- I thought wheelchairs were NHS funded?
A - Wheelchairs are not completely NHS funded. The NHS is amazing but it is stretched leaving people to purchase a chair themselves or be given an inappropriate chair or a voucher towards a wheelchair from a private dealer.
Q- Why do you not get a suitable chair from the NHS?
A - The wheelchairs that the NHS provide have to fall within a budget. Many wheelchair services have contracts with companies to keep the price down but as we know 1 size does not fit all.
Q - What is the voucher scheme?
A - When a wheelchair does not meet needs, the NHS offer a 'Voucher Scheme'. This offers people money towards the purchase of a chair privately but it normally is minimal sums e.g. £400 for a chair costing £4000.
Q - Why do people need new chairs when they have one?
A - People are given a chair for 5 years, they expect a chair may last that long then be replaced. However, people have progressive diseases, like mine. Some people may change body shape, spinal deformity and other problems can occur.
In summary, wheelchair service is a great thing and they help many people. But the more complex your disability and wheelchair the harder it is for them to provide. I know many people seeking funds for chairs at £20K because the NHS does not have the money. Yet without our wheelchairs, we can not go to work, school, university and be part of society.
Motability - Q&A
Q- Motability give disabled people a car for free?
A - in one word - NO. Disabled people assessed under DLA or now PIP are given a mobility entitlement they trade this into Motability for a car. For many people who do not use a wheelchair or need adaptations they do get a Car for their PIP money, however, advance payments can be required.
Q - What is an advance payment?
A - Advance payments are what people on the Motability scheme pay to receive the lease hire vehicle, it is extra to their monthly PIP they sign over.
Q - How much is the advance payment on a car?
A - Advance payments for a standard car (which I can not use) start from £0 to £2000, this is to give people a choice of car e.g. Vauxhall, BMW, Merc.
Q - How much is the advance payment on a wheelchair accessible vehicle?
A- Advance payments for a Wheelchair Accessible vehicle that is an internal transfer or driver solution start from £10,595 up to £32,495. See the difference.
Q - Do you have to pay for adaptations?
A - Yes adaptations are extra to the advance payments quoted on Motability's website. Some are free known as 'Motability managed'. Others like mine for the more severely disabled are not and cost £30,000+.
Q - Can you get a grant for a car?
A - Motability do offer Grants, the criteria for these differ dependent on a wheelchair vehicle or normal car. For a normal car, it is only income based e.g. benefits.
For a drive from wheelchair vehicle, it is based on income so benefits you receive and you must be working full-time, be in education or several other strict criteria. If you have any other adults in your house they must pay towards your adaptation even if it is your own children aged 18+, any savings anyone else has that are not yours are taken into account. Therefore few people get these grants.
It has taken well over a year to get Motability to finally issue a Grant to me for £25,000.
In summary, Motability is excellent if you do not need an adapted car, or want basic free hand controls. If you need a wheelchair accessible vehicle that you drive yourself, the scheme can often seem lacking with no hire car when yours is off the road, 9-12 month lead times on vehicles and £70K+ advance payments.
Thank you for reading my fundraising campaign! I hope you take the time to Donate and Share!
Organizer
Charlotte Mills-Murray
Organizer
