I use hand controls and had noticed certain manoeuvres were getting slightly trickier. I was also thinking about the future should it get more difficult to use the brakes. After speaking with Sue I booked a driving assessment at the Wales Centre as I thought it would be good to see what new technology is on the market and see what they can suggest. As we all know, these things can take a very long time to make it from assessment to sitting on our driveways!
I currently use the Jeff Gosling push-pull accelerator-brake hand control, which is basically a mechanical device. In terms of levels of ease and difficulty to use, I was told during the assessment that they were on the difficult side, which was great as it means there are options to make life easier (and safer)!
The assessment was very thorough and lots of options, pros and cons were discussed. The report was likewise very thorough and easy to follow. It’s now over to me to call a few companies and arrange some demos and take it from there!
Different conditions, different backgrounds and different experiences.
Showing posts with label Independence. Show all posts
Showing posts with label Independence. Show all posts
Wednesday, 27 April 2016
Driving with a Disability by Graham Tomlin
I have a Facioscapulohumeral (FSH) Muscular Dystrophy. It is one of the more benign forms of muscular dystrophy but still results in serious restrictions to my range of movement, particularly in the upper body.
I also have severe, bilateral foot drop; a secondary, but not universal, consequence of having FSH. To control this disability, I wear SAFOs (silicone ankle foot orthosis): they are silicone, hand-made ‘socks’ that precisely wrap around my feet. They provide more flexibility than the more common, rigid AFOs. In my opinion, the former is ‘modern’ and the latter ‘medieval’ but my coloured viewpoint is based on the fact that SAFOs suit my personal circumstances and the current progression of my FSH.
I have been driving a car for over 50 years. My latest car is an automatic with no adaptations other than a scooter hoist. I was 70 just after Christmas and the DVLA warned me that my current Driving Licence would have to be renewed every 3 or so years. Since I knew that the progression of my FSH (and subsequent foot drop) would have to be flagged to the DVLA as a possible impediment to driving a car, I contacted the North West Driving Assessment Service in Haydock near St Helens. They are part of the NHS and assess whether a person is fit to drive a car. The assessment includes a full driving test. The fee is £50. I had previously used their services when I was first definitively diagnosed with FSH in about the Year 2000. At that time, The North West Driving Assessment Service recommended that my next car should be an automatic. I sent a copy of their report to the DVLA. Declarations of disability should always be reported to the DVLA as and when they happen or when they are diagnosed.
I attended my appointment in November 2015. The process took 2 hours and was split into 2 parts: one inside the Centre, and one outside on the road. At all times, an Occupational Therapist and a Driving Test Examiner were present. They were very friendly and understanding, realising why the ability to drive a car is so important in a modern world and for the independence it gives to a person with a disability.
Inside the Centre, the OT specialist asked questions about my disability. He did strength tests on the parts of the body that are used to drive a car. The tests are similar to the ones done in the NMC where you have to push or pull against resistance. He also made notes about neck movements. I was asked to stand on a line and read a standard Eye Examination chart pinned on a wall. I was taken to another room. There was a rig of the front end of a car complete with steering wheel, seats and foot controls attached to a computer. The accelerator pedal was connected to a speaker that mimicked the noise of driving a car. The purpose of the test was to measure the time of the transfer of my foot from the accelerator to the brake pedal. The OT specialist set off the alarm while the Driving Test Examiner observed whether my foot struck the brake pedal correctly. The time astonished me, they said that my reaction time was above average. The next test involved a metal frame mounted in front of the ‘car’ where there was a matrix of about 10-12 lights. I had to transfer my foot from the accelerator to the brake pedal - like before - but this time whenever a light came on. This lasted several minutes with many repeated foot movements. The repetitions are designed for endurance: times usually deteriorate the longer the test lasts. My reaction times actually improved. I put this down to the exercise sessions that I attend at the NMC, especially on a Concept Rower!
The ‘outside’ part of the assessment consisted of a full driving test beginning with reading a number plate at the appropriate distance. They had a full range of test cars available including, to my surprise, an automatic Ford B-Max (my own car). The usual components of a driving test were all there, including an emergency stop, reversing into a side road and a hill start. The only difference was that, not only did I have a Test Examiner sitting next to me, but I had the OT specialist sitting in the back
seat watching every movement I made. I drove through the outskirts and centre of St. Helens, confronted with every aspect of modern driving. I even had an unplanned emergency stop when confronted by a careless, juggernaut lorry, something they complimented me on. The Driving Test lasted over 1 hour. I enjoyed every minute of it.
On returning to the Centre, and after a very brief discussion between themselves, they said I was ‘fine’. They sent me 3 copies of their report about 2 weeks later. One copy was for my Doctor. I attached the main copy to my application to the DVLA and shortly after received my photo driving licence (automatic cars only). The DVLA have given me another 3 years. This will give me time to approach the North West Driving Assessment Service to investigate the possibility of hand controls, another service that they provide.
Bridgewater Community Healthcare NHS Trust, The North West Driving Assessment Service, Fleet House, Pye Close, Haydock, St. Helens, WA11 9SJ. Tel: 01942 483713
Email: mobility.centre@bridgewater.nhs.uk
For information about other assessment centres visit www.mobility-centres.org.uk, The Forum of Mobility Centres
I also have severe, bilateral foot drop; a secondary, but not universal, consequence of having FSH. To control this disability, I wear SAFOs (silicone ankle foot orthosis): they are silicone, hand-made ‘socks’ that precisely wrap around my feet. They provide more flexibility than the more common, rigid AFOs. In my opinion, the former is ‘modern’ and the latter ‘medieval’ but my coloured viewpoint is based on the fact that SAFOs suit my personal circumstances and the current progression of my FSH.
I have been driving a car for over 50 years. My latest car is an automatic with no adaptations other than a scooter hoist. I was 70 just after Christmas and the DVLA warned me that my current Driving Licence would have to be renewed every 3 or so years. Since I knew that the progression of my FSH (and subsequent foot drop) would have to be flagged to the DVLA as a possible impediment to driving a car, I contacted the North West Driving Assessment Service in Haydock near St Helens. They are part of the NHS and assess whether a person is fit to drive a car. The assessment includes a full driving test. The fee is £50. I had previously used their services when I was first definitively diagnosed with FSH in about the Year 2000. At that time, The North West Driving Assessment Service recommended that my next car should be an automatic. I sent a copy of their report to the DVLA. Declarations of disability should always be reported to the DVLA as and when they happen or when they are diagnosed.
I attended my appointment in November 2015. The process took 2 hours and was split into 2 parts: one inside the Centre, and one outside on the road. At all times, an Occupational Therapist and a Driving Test Examiner were present. They were very friendly and understanding, realising why the ability to drive a car is so important in a modern world and for the independence it gives to a person with a disability.
Inside the Centre, the OT specialist asked questions about my disability. He did strength tests on the parts of the body that are used to drive a car. The tests are similar to the ones done in the NMC where you have to push or pull against resistance. He also made notes about neck movements. I was asked to stand on a line and read a standard Eye Examination chart pinned on a wall. I was taken to another room. There was a rig of the front end of a car complete with steering wheel, seats and foot controls attached to a computer. The accelerator pedal was connected to a speaker that mimicked the noise of driving a car. The purpose of the test was to measure the time of the transfer of my foot from the accelerator to the brake pedal. The OT specialist set off the alarm while the Driving Test Examiner observed whether my foot struck the brake pedal correctly. The time astonished me, they said that my reaction time was above average. The next test involved a metal frame mounted in front of the ‘car’ where there was a matrix of about 10-12 lights. I had to transfer my foot from the accelerator to the brake pedal - like before - but this time whenever a light came on. This lasted several minutes with many repeated foot movements. The repetitions are designed for endurance: times usually deteriorate the longer the test lasts. My reaction times actually improved. I put this down to the exercise sessions that I attend at the NMC, especially on a Concept Rower!
The ‘outside’ part of the assessment consisted of a full driving test beginning with reading a number plate at the appropriate distance. They had a full range of test cars available including, to my surprise, an automatic Ford B-Max (my own car). The usual components of a driving test were all there, including an emergency stop, reversing into a side road and a hill start. The only difference was that, not only did I have a Test Examiner sitting next to me, but I had the OT specialist sitting in the back
seat watching every movement I made. I drove through the outskirts and centre of St. Helens, confronted with every aspect of modern driving. I even had an unplanned emergency stop when confronted by a careless, juggernaut lorry, something they complimented me on. The Driving Test lasted over 1 hour. I enjoyed every minute of it.
On returning to the Centre, and after a very brief discussion between themselves, they said I was ‘fine’. They sent me 3 copies of their report about 2 weeks later. One copy was for my Doctor. I attached the main copy to my application to the DVLA and shortly after received my photo driving licence (automatic cars only). The DVLA have given me another 3 years. This will give me time to approach the North West Driving Assessment Service to investigate the possibility of hand controls, another service that they provide.
Bridgewater Community Healthcare NHS Trust, The North West Driving Assessment Service, Fleet House, Pye Close, Haydock, St. Helens, WA11 9SJ. Tel: 01942 483713
Email: mobility.centre@bridgewater.nhs.uk
For information about other assessment centres visit www.mobility-centres.org.uk, The Forum of Mobility Centres
Friday, 31 July 2015
University, work and independence - James Taubman
I am a 23 year old business graduate originally from North Wales. I have Duchenne Muscular Dystrophy which I was diagnosed with at birth. I have used a wheelchair ever since I was 12 years old.
University
In 2013 I graduated from Glyndwr University in Wrexham with a BA in Business Marketing (2:2). The assessment consisted of coursework, examinations, group work and presentations. Attending university was a really enjoyable 3 years both from a social point of view and an educational aspect. The facilities and services for disabled students were very good.
Work Experience and Training
The NMC has given me with vital work experience, which was the initial reason that I made contact. Fresh from graduating from University, the NMC have provided me with a platform to gain new skills, which have included learning database software, speaking at events, marketing tasks such as creating product packages, and I recently began a graphic design course in-house.
I work at NMC as a Database and Marketing Assistant, and my main role involves assisting in the management of all the NMC databases. Joining and being part of NMC has brought so many benefits.
My condition has a physical impact on my work ability in the following ways;
I find the Neuromuscular Centre a great and welcoming place to visit. It provides a sense of community with an enjoyable work environment that is professional and highly sociable at the same time.
Independent Living
I live in Chester City in my own apartment with 24 hour care. Many of the people that help care for me are friends that I have met, so we are a close knit team. Whilst at university I began my care package with a care agency. However, after a year we switched to direct payments which has proved easier, providing me with more choice over who cares for me.
Leisure / Driving
I did attempt to learn to drive and had several lessons with an instructor in an adapted vehicle. However I felt it just wasn’t for me. This hasn’t stopped me getting around as I have a Motability vehicle which my PA drives. I have travelled abroad around Europe, USA & Canada, the most memorable places being Amsterdam, Toronto and New York.
I enjoy nights out with friends, going to the cinema, music concerts, days out/walks and eating out. One of my big passions is football. I‘m an Everton fan and also a season ticket holder so I go to home games. I have also been to Wembley twice.
University
In 2013 I graduated from Glyndwr University in Wrexham with a BA in Business Marketing (2:2). The assessment consisted of coursework, examinations, group work and presentations. Attending university was a really enjoyable 3 years both from a social point of view and an educational aspect. The facilities and services for disabled students were very good.
Work Experience and Training
The NMC has given me with vital work experience, which was the initial reason that I made contact. Fresh from graduating from University, the NMC have provided me with a platform to gain new skills, which have included learning database software, speaking at events, marketing tasks such as creating product packages, and I recently began a graphic design course in-house.
I work at NMC as a Database and Marketing Assistant, and my main role involves assisting in the management of all the NMC databases. Joining and being part of NMC has brought so many benefits.
My condition has a physical impact on my work ability in the following ways;
- Difficulty in using standard desks
- Using a keyboard to type is a struggle - Drinking and eating - Using the toilet.
- Height adjustable desks throughout the building - Providing computers or laptops with on-screen keyboard devices
- Care assistance with eating, drinking or anything physical - Providing unique and specialist physiotherapy
- Fully accessible toilets and rooms with hoists
- Helpful support and advice about the condition or just general matters
- Work experience and training motivation.
I find the Neuromuscular Centre a great and welcoming place to visit. It provides a sense of community with an enjoyable work environment that is professional and highly sociable at the same time.
Independent Living
I live in Chester City in my own apartment with 24 hour care. Many of the people that help care for me are friends that I have met, so we are a close knit team. Whilst at university I began my care package with a care agency. However, after a year we switched to direct payments which has proved easier, providing me with more choice over who cares for me.
Leisure / Driving
I did attempt to learn to drive and had several lessons with an instructor in an adapted vehicle. However I felt it just wasn’t for me. This hasn’t stopped me getting around as I have a Motability vehicle which my PA drives. I have travelled abroad around Europe, USA & Canada, the most memorable places being Amsterdam, Toronto and New York.
I enjoy nights out with friends, going to the cinema, music concerts, days out/walks and eating out. One of my big passions is football. I‘m an Everton fan and also a season ticket holder so I go to home games. I have also been to Wembley twice.
Emergency contact disc, as an alternative to the Tax Disc
The Emergency Contact Disc contains next of kin contact details and medical alert information for the driver. In the event of a medical emergency or road traffic collision that renders the occupants unable to communicate, a first responder will be able to obtain vital information that is not otherwise accessible at the scene. The disc can be cut out and placed into the now redundant, tax disc holder. The information sections fold inwards so it would not be viewed by passers-by. All information is optional and the blank discs can be used to add customised information. The Emergency Contact Disc can be used alongside existing medical alert products like bracelets and necklaces.
Download the Emergency Contact Disc at: http://www.westmercia. police.uk/news/news-articles/ police-launch-emergency- contact-disc-as-alternative-totax-disc.html
Download the Emergency Contact Disc at: http://www.westmercia. police.uk/news/news-articles/ police-launch-emergency- contact-disc-as-alternative-totax-disc.html
Sunday, 30 November 2014
My Care Package has changed my life - Tony Whitlan
I have FSH-MD and I have been coming to the NMC for a number of years. I do enjoy my visits. I was diagnosed in 1984 and have gradually gone downhill since, to the point that about three or four years ago I was starting to spend more and more time in my house than I would have liked. I was having some physio locally, but they suggested getting a PA/Carer to help me get out and about in the fresh air, go shopping and also to help me enjoy me hobbies. They contacted Adult Social Services, who came to visit us and explained about Direct Payments.
I chose to do it myself. I make sure that I send my employees time sheets in on time to the company who deduct any Tax/National Insurance. The company also helps to advertise for PA's. You could also have a friend or family member who could help you.
The Adult Social Services Team will discuss your needs, whether you require help to get up in the morning, help with meals, help with domestic tasks, help with appointments or help to fulfil hobbies and leisure interests.
I have enough hours a week to help with everything I need. I can now arrange to go out when I want to and do what I want. It also helps my wife Tracey. She works full time as an NHS nurse assistant, helps look after me and her Mum who has had a stroke and also keeps on top of things in the house. My PA does really help us both out.
I would highly recommend having a PA/Carer. They help you to keep a bit of your sanity, they support you in getting out & about and enable you to fulfil your hobbies and interests. Don't delay, look into this today, it will change your life for the better.
For more information about personal budgets go to www.disabilityrightsuk.org/how
Please remember that the NMC is here to support you so if you need some help and support with Personal Budgets, please speak to Sue Walker, Support Worker at NMC.
I chose to do it myself. I make sure that I send my employees time sheets in on time to the company who deduct any Tax/National Insurance. The company also helps to advertise for PA's. You could also have a friend or family member who could help you.
The Adult Social Services Team will discuss your needs, whether you require help to get up in the morning, help with meals, help with domestic tasks, help with appointments or help to fulfil hobbies and leisure interests.
I have enough hours a week to help with everything I need. I can now arrange to go out when I want to and do what I want. It also helps my wife Tracey. She works full time as an NHS nurse assistant, helps look after me and her Mum who has had a stroke and also keeps on top of things in the house. My PA does really help us both out.
I would highly recommend having a PA/Carer. They help you to keep a bit of your sanity, they support you in getting out & about and enable you to fulfil your hobbies and interests. Don't delay, look into this today, it will change your life for the better.
For more information about personal budgets go to www.disabilityrightsuk.org/how
Please remember that the NMC is here to support you so if you need some help and support with Personal Budgets, please speak to Sue Walker, Support Worker at NMC.
My Changing Care Package – Heather Murrant
I have had a care package for the last 20 years and as my life as changed so my package has changed. It started as a small package of care with an agency. However this didn’t fit into my life at all and it had a big impact on my daughter who was then only a year old, as we never knew who was coming through the door next.
My friend told me about Direct Payments and the Independent Living Fund and this was the start of a great journey to freedom for both my children and me. At this time there were only 3 people on direct payments so I was asked to help write the remit for the Council as the Government said this was the way to go. So, we had several meetings with members of Wired, the Council and myself. During this time I had employed my first PA and found it worked well. We had children of a similar age so we all went for days out etc. My life started to open up and I came to the NMC.
Then followed college a couple of times a week where I met my next PA. She has become one of my best friends. I have found most of my PA’s through friends or acquaintances.
As I have got older my needs have changed and so has my package. It is quite a large package now as I cannot turn in bed etc. so I have night care (which can be difficult to find). There have also been a couple of instances where my PA’s have been off on long term sick and this did put added strain on my girls and I, so 18 months ago I made the decision to combine using an agency and PA.
As I work from home I have to be able to guarantee that I am up and ready for work so I use an agency. When I am out and about and have night care I use PA’s and when it comes to holiday cover I ask the PA’s first and then if they can’t cover I ask the agency. I find that by combining an agency with PA’s it works quite well and it does not leave me vulnerable. It also gives me more freedom.
When I was younger, I was very reliant emotionally and physically on my personal assistants and very close to them. They become like family and sometimes could over step the mark, which was a fault on my part too for not instilling clear boundaries.
I now don’t need that support. I make my own decisions and I feel quite happy to have time on my own. I am not frightened to live my life independently. My children are grown up and I am looking forward to the freedom the package will allow me in the next phase of my life
My friend told me about Direct Payments and the Independent Living Fund and this was the start of a great journey to freedom for both my children and me. At this time there were only 3 people on direct payments so I was asked to help write the remit for the Council as the Government said this was the way to go. So, we had several meetings with members of Wired, the Council and myself. During this time I had employed my first PA and found it worked well. We had children of a similar age so we all went for days out etc. My life started to open up and I came to the NMC.
Then followed college a couple of times a week where I met my next PA. She has become one of my best friends. I have found most of my PA’s through friends or acquaintances.
As I have got older my needs have changed and so has my package. It is quite a large package now as I cannot turn in bed etc. so I have night care (which can be difficult to find). There have also been a couple of instances where my PA’s have been off on long term sick and this did put added strain on my girls and I, so 18 months ago I made the decision to combine using an agency and PA.
As I work from home I have to be able to guarantee that I am up and ready for work so I use an agency. When I am out and about and have night care I use PA’s and when it comes to holiday cover I ask the PA’s first and then if they can’t cover I ask the agency. I find that by combining an agency with PA’s it works quite well and it does not leave me vulnerable. It also gives me more freedom.
When I was younger, I was very reliant emotionally and physically on my personal assistants and very close to them. They become like family and sometimes could over step the mark, which was a fault on my part too for not instilling clear boundaries.
I now don’t need that support. I make my own decisions and I feel quite happy to have time on my own. I am not frightened to live my life independently. My children are grown up and I am looking forward to the freedom the package will allow me in the next phase of my life
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