I’ve recently just got back from a Caribbean cruise, it was fantastic. I went with my mum and dad and we all thoroughly enjoyed it.
It was such a good experience and a holiday I’ll never forget. We’ve been on a number of cruises now, sailing from Southampton back to Southampton. We find it really easy because we take all the equipment we need, ventilator, cough assist, hoist and shower chair in our van and then when we get down there the porters get all your luggage and equipment and put it straight in your cabin for you. So no need to worry, you can just relax and enjoy the holiday. The ship is highly accessible so you can get all over it without a problem, and getting on and off the ship is no problem as there are plenty of porters to help.
The disabled cabins are brilliant. They are twice the size of normal cabins so there is plenty of space for your wheelchair and all your equipment. The en-suite bathroom also has plenty of space. We had a balcony cabin for this cruise and like the cabin, the balcony is twice the size, so you can get out in your wheelchair and have a look out at the sea.
The best thing about cruising though is waking up in a different location everyday and getting the chance to explore a number of different places. This cruise was for 28 days and toured the West Indies and Caribbean, also stopping at Madeira and the Azores. My favourite places were Barbados where we walked to the beach and got some sun beds near a bar, which was perfect. Then Tortola where we got in the only wheelchair accessible taxi on the island and it took us to the other side of the island to a beach. It was picturesque just as you’d imagine of the Caribbean. When we got in the taxi the driver put loads of clamps on my chair and we thought “blimey he’s very safety conscious” and on the way we knew why. He was like Lewis Hamilton, driving up the steepest of hills at full speed he overtook a van and a taxi on a hairpin bend. It was bonkers, who needs a rollercoaster. It was a bit hairy but I’d do it again in a heartbeat.
But my most favourite place has to be Saint Maarten because it was a 10-minute walk to the beach and you can go on the beach with your wheelchair, as the sand is very firm. On a previous cruise a few years back we had been to Saint Maarten and the sun bed guy looked after us really well, with good deals on drinks and brought me 2 buckets filled with sea water to put my feet in because I couldn’t get to the sea. When we were leaving he said “next time you come to Saint Maarten come and find me I’ll be right here”! So when we got to the beach we went to find him and he was there, he came running over “Mark, Mark!!!” He remembered us, it made our holiday, we couldn’t have asked for a better way to end our time in the Caribbean! If anyone is thinking about going on a cruise but aren’t sure, just go for it you’ll love it.
Different conditions, different backgrounds and different experiences.
Wednesday 27 April 2016
Acupuncture by Jonathan Smith
What is Acupuncture?
Acupuncture is a form of therapy in which fine needles are inserted into specific points on the body for therapeutic or preventative reasons. It originated in China over 3,000 years ago and is used in Traditional Chinese Medicine (TCM) to treat a variety of issues from morning sickness to fertility problems. In the Western Medical Model of acupuncture – the type practiced at NMC – acupuncture is used primarily for the treatment of pain.
How does it work?
The Chinese believe acupuncture is effective for the modulating effect it can have on the body’s natural energy, or Qi (Chee); imbalances in the harmony of this energy lead to medical problems and the correction of these imbalances through acupuncture can restore a body to health. Scientific studies have shown that acupuncture works by stimulating the body’s own natural pain-relieving mechanisms, releasing pain relieving hormones into the blood stream and reducing muscle tension. The needles remain in situ for 20-30 minutes and are stimulated to produce an ‘achy, heavy’ sensation known as De Qi.
Is Acupuncture safe?
Acupuncture is generally very safe, especially when performed by a trained physiotherapist. However, as acupuncture is technically an invasive intervention there is the risk of infection; when performed by a trained professional this risk is extremely low. Serious side effects are similarly extremely rare, however some people experience some transient symptoms of sleepiness, light headedness etc. during or after treatment.
Does acupuncture work in MD?
Yes! Acupuncture has been an available treatment at NMC through different professionals for a few years and has been effective in the treatment of a variety of issues related to pain. It is especially effective at reducing muscular pain related to chronic tension which is very commonly seen in MD and has the side effects of improving sleep and movement following treatment. Acupuncture can also be used alongside other therapies such as stretching and exercise to improve outcomes and is especially useful in the treatment of multiple sites of pain at the same time.
Jonathan Smith MRes MCSP, Clinical Specialist Physiotherapist, Neuromuscular Centre T: 01606 861799 E: jonny.smith@nmcentre.com
Acupuncture is a form of therapy in which fine needles are inserted into specific points on the body for therapeutic or preventative reasons. It originated in China over 3,000 years ago and is used in Traditional Chinese Medicine (TCM) to treat a variety of issues from morning sickness to fertility problems. In the Western Medical Model of acupuncture – the type practiced at NMC – acupuncture is used primarily for the treatment of pain.
How does it work?
The Chinese believe acupuncture is effective for the modulating effect it can have on the body’s natural energy, or Qi (Chee); imbalances in the harmony of this energy lead to medical problems and the correction of these imbalances through acupuncture can restore a body to health. Scientific studies have shown that acupuncture works by stimulating the body’s own natural pain-relieving mechanisms, releasing pain relieving hormones into the blood stream and reducing muscle tension. The needles remain in situ for 20-30 minutes and are stimulated to produce an ‘achy, heavy’ sensation known as De Qi.
Is Acupuncture safe?
Acupuncture is generally very safe, especially when performed by a trained physiotherapist. However, as acupuncture is technically an invasive intervention there is the risk of infection; when performed by a trained professional this risk is extremely low. Serious side effects are similarly extremely rare, however some people experience some transient symptoms of sleepiness, light headedness etc. during or after treatment.
Does acupuncture work in MD?
Yes! Acupuncture has been an available treatment at NMC through different professionals for a few years and has been effective in the treatment of a variety of issues related to pain. It is especially effective at reducing muscular pain related to chronic tension which is very commonly seen in MD and has the side effects of improving sleep and movement following treatment. Acupuncture can also be used alongside other therapies such as stretching and exercise to improve outcomes and is especially useful in the treatment of multiple sites of pain at the same time.
Jonathan Smith MRes MCSP, Clinical Specialist Physiotherapist, Neuromuscular Centre T: 01606 861799 E: jonny.smith@nmcentre.com
Airshows, a Great Day Out by William Garside
The Royal International Air Tattoo, run since 1976 is the largest military air show on the planet. For me the main draw to the 2015 show was the Avro Vulcan bomber which was flying its final display season.
As an Aerospace Engineer I must confess I can easily get carried away at air shows but before this happens I must mention the accessibility of the event. Held at RAF Fairford, a standby US Air Force base and former Space Shuttle emergency landing site it is suitably flat to accommodate such a large runway. As the event was so big there was a regular fully accessible bus service which takes you between the individual ‘zones’ along the airfield which included the static displays, stalls and company stands. There was also an accessible seating area which if you love plane spotting as much as I do is excellent because it is as close to and as near the middle of the runway as you can be which means that the flying displays are centred on your position! In total there were nearly eight hours of flying on each of the days of the event so there was certainly plenty to see.
Of course, the show is not just about the many aircraft flying with many more on the ground to look at and the sheer number of aircraft is impressive on its own. For me the highlight of the static displays had to be the Royal Air Force’s huge new Airbus A400M ‘Atlas’ transport aircraft. It was open to the public and access into and out of the aircraft was via the huge rear ramp which went down to ground level. Now as a powerchair user I had to take this as a challenge and with a run up made it up the ramp into the main cabin. Indeed from experience I can say that the RAF’s new airlifter is wheelchair accessible!
So in conclusion the Royal International Air Tattoo is a fully accessible event. With so much to see I cannot recommend it enough, even if you’ve never been to an air show before. Unlike many large air shows it is held every year and I can assure you, its scale, flying and static displays are sure to impress!
For information about forthcoming airshows visit www.air-shows.org.uk
As an Aerospace Engineer I must confess I can easily get carried away at air shows but before this happens I must mention the accessibility of the event. Held at RAF Fairford, a standby US Air Force base and former Space Shuttle emergency landing site it is suitably flat to accommodate such a large runway. As the event was so big there was a regular fully accessible bus service which takes you between the individual ‘zones’ along the airfield which included the static displays, stalls and company stands. There was also an accessible seating area which if you love plane spotting as much as I do is excellent because it is as close to and as near the middle of the runway as you can be which means that the flying displays are centred on your position! In total there were nearly eight hours of flying on each of the days of the event so there was certainly plenty to see.
Vulcan being put through her paces was a very impressive sight
Of course, the show is not just about the many aircraft flying with many more on the ground to look at and the sheer number of aircraft is impressive on its own. For me the highlight of the static displays had to be the Royal Air Force’s huge new Airbus A400M ‘Atlas’ transport aircraft. It was open to the public and access into and out of the aircraft was via the huge rear ramp which went down to ground level. Now as a powerchair user I had to take this as a challenge and with a run up made it up the ramp into the main cabin. Indeed from experience I can say that the RAF’s new airlifter is wheelchair accessible!
The A400M ‘Atlas’ with its rear ramp is incredibly manoeuvrable for its size
So in conclusion the Royal International Air Tattoo is a fully accessible event. With so much to see I cannot recommend it enough, even if you’ve never been to an air show before. Unlike many large air shows it is held every year and I can assure you, its scale, flying and static displays are sure to impress!
For information about forthcoming airshows visit www.air-shows.org.uk
Scary Moments... Cough Assist Machine to the rescue! by Andrea Duckworth
I have been asked to share a recent experience with you. In December, the week leading up to Christmas, I was unwell with a virus. My sinuses seemed permanently blocked and I was constantly blowing my nose.
I felt at times I couldn’t breathe properly due to the congestion. I took the usual remedies; paracetamol, Nurofen, Vicks and also a decongestant.
In addition I increased the use of my cough assist machine, sometimes using it 10 times a day to try and clear the congestion. On the Sunday before Christmas I had a very scary moment. Despite using the cough assist machine, I couldn’t clear the catarrh from my throat. It felt trapped and was affecting my ability to breathe. I could feel myself becoming anxious and very hot. I took off some of my clothes, opened the window for some air and then went back on my cough assist. My husband and daughter came to try and help but they felt helpless and my husband asked if I he needed to ring the hospital. I said that if I couldn’t clear it then yes. I kept persevering with the cough assist machine and thankfully I managed a good cough and the catarrh did eventually clear. I was very frightened though and it made me feel particularly vulnerable.
The next day I made a doctors’ appointment and also rang the NMC Physio Team for advice and reassurance. Due to my vulnerability, I was put on a course of antibiotics. Whilst they did not shorten the length of time that I had the virus, they did stop it from getting any worse and turning into something nasty such as pneumonia.
I consider myself to be healthy, very rarely ill and things never generally phase me. However, on this occasion I was scared. I am so grateful that I have a cough assist machine at home. Through using it on a daily and regular basis I was not phased by using it more frequently in an acute situation. Had I not had a machine at home, I would have been admitted to hospital.
I would say to anyone who has respiratory problems that a cough assist machine really can help your respiratory well being. If you think you could benefit from using a Cough Assist Machine, please speak to your Consultant and / or seek advice from The Physio Team at NMC.
Past editions of One Voice are a treasure-trove of useful information. They are available on the NMC website, but in addition, we have set up a website onevoicearticles.blogspot.co.uk. We will post articles on this site that appear in One Voice, and we will try to add as many past articles as we can. We hope that it will make it easier to search for and find topics that have been covered in previous editions.
Dealing with Disability and Debt by Karen Pritchard
So Christmas is over. We all possibly felt the pressure to spend more money at that time of year, increasing our money worries.
Having a disability can make us more vulnerable to debt, more so in this current economic climate. Either we struggle to borrow money or we turn to our friends, family or other means.
Increasing your income
The first step is to look at your income. Being disabled you may have additional costs, for instance, paying for carers, making adaptations to your home or the extra travel costs in attending hospital appointments. Not all people claim their full entitlement as the stress and hassle of this can be too much to bear. Some aspects of disabilities may make it more difficult for a person to manage their money well. Your disability may entitle you to financial help with some of these areas to ease your debt problems. Denise Boyall, the NMC support worker, can point you in the right direction.
Reducing your debt
So many of us push aside our concerns when it comes to debt. We may find it extra difficult to cope with facing this issue as we focus on other aspects that are directly affected by coping day to day with our disability, but as with anyone, ignoring the issue will only worsen the situation. Even if your income is low or you don’t have a job, there are steps you can take to help.
Contact your lenders
This is an important step if you get into difficulty repaying your debt. They won’t waive your debt but they may help you renegotiate your borrowing and could reduce the money you need to pay back each month to a more achievable level. If you have loaned money from friends or family try to discuss your difficulties with them. It may help them to understand your situation. Although this can be difficult it is best to be upfront about it.
Determine your budget
Total up your weekly or monthly earnings, as well as any benefits you receive, along with everything you spend money on during this period. Identify non-essential areas where you can cut back on your spending. Determine how much you spend on your accommodation, secured debts that could mean you losing your home, council tax, utility bills, food and anything that relates to your disability. Pay for these expenses first and then see how much money is left over for other items including unsecured loans. Don’t consider borrowing money to pay off your existing loans. If your expenditure exceeds your income seek advice about managing this situation.
Ask for help
Speaking with an impartial debt advisor will allow them to tailor a plan to your individual needs to help clear your debts. It is also very important to seek advice on whether you are receiving all the financial assistance that you are entitled to. Professional advice on dealing with your debts is always available free of charge from the contacts below. Once you face the reality of your debt and get the help you need, you have taken the first steps to taking back control of your life.
Useful contacts
National Debtline: www.nationaldebtline.org Tel: 0808 808 4000 www.gov.uk/options-for-paying-off-your-debts/ overview Step Change: www.StepChange.org
Having a disability can make us more vulnerable to debt, more so in this current economic climate. Either we struggle to borrow money or we turn to our friends, family or other means.
Increasing your income
The first step is to look at your income. Being disabled you may have additional costs, for instance, paying for carers, making adaptations to your home or the extra travel costs in attending hospital appointments. Not all people claim their full entitlement as the stress and hassle of this can be too much to bear. Some aspects of disabilities may make it more difficult for a person to manage their money well. Your disability may entitle you to financial help with some of these areas to ease your debt problems. Denise Boyall, the NMC support worker, can point you in the right direction.
Reducing your debt
So many of us push aside our concerns when it comes to debt. We may find it extra difficult to cope with facing this issue as we focus on other aspects that are directly affected by coping day to day with our disability, but as with anyone, ignoring the issue will only worsen the situation. Even if your income is low or you don’t have a job, there are steps you can take to help.
Contact your lenders
This is an important step if you get into difficulty repaying your debt. They won’t waive your debt but they may help you renegotiate your borrowing and could reduce the money you need to pay back each month to a more achievable level. If you have loaned money from friends or family try to discuss your difficulties with them. It may help them to understand your situation. Although this can be difficult it is best to be upfront about it.
Determine your budget
Total up your weekly or monthly earnings, as well as any benefits you receive, along with everything you spend money on during this period. Identify non-essential areas where you can cut back on your spending. Determine how much you spend on your accommodation, secured debts that could mean you losing your home, council tax, utility bills, food and anything that relates to your disability. Pay for these expenses first and then see how much money is left over for other items including unsecured loans. Don’t consider borrowing money to pay off your existing loans. If your expenditure exceeds your income seek advice about managing this situation.
Ask for help
Speaking with an impartial debt advisor will allow them to tailor a plan to your individual needs to help clear your debts. It is also very important to seek advice on whether you are receiving all the financial assistance that you are entitled to. Professional advice on dealing with your debts is always available free of charge from the contacts below. Once you face the reality of your debt and get the help you need, you have taken the first steps to taking back control of your life.
Useful contacts
National Debtline: www.nationaldebtline.org Tel: 0808 808 4000 www.gov.uk/options-for-paying-off-your-debts/ overview Step Change: www.StepChange.org
Cheshire West and Chester Supported Internships - Joanna Davies, Supported Internship Coordinator
Cheshire West and Chester Council are working in partnership with local Colleges and training providers to offer supported internships to young people across the borough.
A Supported Internship is a structured programme of study undertaken by a young person aged 16-24 with learning difficulties or disabilities who has a real desire to work.
It is a job specially adapted to meet the skills and ability of an individual whilst fulfilling a genuine business need for the employer.
The Supported Internship programme combines a work placement with an employer and time in College to gain skills such as Maths, English, ICT, health & safety and employability skills. The young person can spend up to 4 days in placement and one day at College working towards a qualification depending on their individual needs.
A supported internship offers a consistent package of support for the young person, including a job coach who will be on hand at the placement to guide and mentor the young person as appropriate and offer support to the employer.
The overall aim is to equip those young people with the skills they need to progress in the workplace.
To be eligible to access the programme the young person must be aged between 16 – 24 years old and have a current Learning Difficulty Assessment or Education Health Care Plan and have a real desire to work.
As well as offering placements within many of our own departments, Cheshire West and Chester Council are working with a wide range of employers to offer young people the opportunity to access a diverse mix of career pathways, ensuring that placements will support their career aspirations. For example we have three young people placed at Chester Zoo, (Chris, Bradley & Kyle are undertaking roles in the restaurants and with the grounds and maintenance teams) and all have said how much they are enjoying their placements and how caring and supportive Chester Zoo have been towards them.
If you would like to find out more about Supported Internships or know a young person who may benefit from being on the programme please contact: Joanna Davies, Supported Internship Coordinator, Cheshire West and Chester Council. Mobile: 07770703544 Email: Joanna.davies@ cheshirewestandchester.gov.uk
A Supported Internship is a structured programme of study undertaken by a young person aged 16-24 with learning difficulties or disabilities who has a real desire to work.
It is a job specially adapted to meet the skills and ability of an individual whilst fulfilling a genuine business need for the employer.
The Supported Internship programme combines a work placement with an employer and time in College to gain skills such as Maths, English, ICT, health & safety and employability skills. The young person can spend up to 4 days in placement and one day at College working towards a qualification depending on their individual needs.
A supported internship offers a consistent package of support for the young person, including a job coach who will be on hand at the placement to guide and mentor the young person as appropriate and offer support to the employer.
The overall aim is to equip those young people with the skills they need to progress in the workplace.
To be eligible to access the programme the young person must be aged between 16 – 24 years old and have a current Learning Difficulty Assessment or Education Health Care Plan and have a real desire to work.
As well as offering placements within many of our own departments, Cheshire West and Chester Council are working with a wide range of employers to offer young people the opportunity to access a diverse mix of career pathways, ensuring that placements will support their career aspirations. For example we have three young people placed at Chester Zoo, (Chris, Bradley & Kyle are undertaking roles in the restaurants and with the grounds and maintenance teams) and all have said how much they are enjoying their placements and how caring and supportive Chester Zoo have been towards them.
If you would like to find out more about Supported Internships or know a young person who may benefit from being on the programme please contact: Joanna Davies, Supported Internship Coordinator, Cheshire West and Chester Council. Mobile: 07770703544 Email: Joanna.davies@ cheshirewestandchester.gov.uk
My experienceof the reassessment by Sanjay Vaja
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!
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!
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
Tuesday 12 April 2016
What's it like to Foster
I have spent the last hour sitting at my computer trying to find the words to convey what it's like to be a foster carer...Its not an easy thing to sum up. Most of the time, I do exactly the same as any other parent. School runs, meals, homework, cleaning up, shopping,...etc...etc...etc......most of the time.
On occasions I have to deal with difficult behaviour, or listen to harrowing things, but that's rare, there are lots of misconceptions about the children in care, and how they behave. These kids have had hard lives, they don't know how to deal with it. They don't have the skills. They need to be taught. They don't know why they do what they do, and their behaviour is a reflection of what has happened to them....but don't all children behave badly at times?...besides Iʼm trained how to handle it. Iʼm the professional.
The difference is in the detail. People say to me “I couldn't do it”, but I often wonder if they mix up couldn't with wouldn't...would they allow their own children to be neglected or abused or exploited, the answer is NO....if they knew that was happening to their own children could they do something about it, the answer is YES.
Why is it different for someone else's child than your own?
The detail is, these children are just like yours, with all the bad bits that your good parenting protected them from. It was you as a parent that protected them from harm...it was your good upbringing that gave you the skills to be able to protect a child from harm...
The children I look after are all different, have all had different experiences, but they all share a common base, they know fear, and pain, and neglect, and abuse...they only know that people hurt them. They don't know how to trust. Why would they. The people they trusted the most also let them down the most.
Fostering is about change. Its about proving to a child that life is not what they think it is. It's about being prepared to show them no matter how hard they try to show you youʼre wrong. Its mostly about patience, and consistency, and honesty. Its also about being like a swan......calm on the surface and all that......
Its the part the children donʼt see thatʼs perhaps the most important, The ability to be professional in the face of hostility or conflict. The ability to challenge poor decisions and poor practice. Being the person who fights for whatʼs right not whatʼs cost efficient. The person who retains balance and common sense and the over riding desire to speak for and defend a child who canʼt defend themselves. The doing whatʼs right not whatʼs easy.
Sound dramatic?.. itʼs not really. Itʼs all about working together with other professionals for whatʼs best, and doing so when not everyone agrees. In this process the foster carer is the most important person in the room. Youʼre the one with all the facts about that child, you live with them, and you make the most difference to them with what you do every day.
Fostering isnʼt for everyone, some people canʼt deal with the realities of what these children have faced, or the realities of trying to repair it. I wonʼt say itʼs easy, itʼs not. It is challenging, and can be stressful. Itʼs in no way easy money.
For me, when you help these kids heal and grow and thrive, and you see it. Itʼs worth it. Are they always grateful, no, but its not about gratitude, its about the long term future, and the kind of society we want to live in, and breaking the repeating patterns of these families.
Itʼs about making lives better....thatʼs enough for me.
On occasions I have to deal with difficult behaviour, or listen to harrowing things, but that's rare, there are lots of misconceptions about the children in care, and how they behave. These kids have had hard lives, they don't know how to deal with it. They don't have the skills. They need to be taught. They don't know why they do what they do, and their behaviour is a reflection of what has happened to them....but don't all children behave badly at times?...besides Iʼm trained how to handle it. Iʼm the professional.
The difference is in the detail. People say to me “I couldn't do it”, but I often wonder if they mix up couldn't with wouldn't...would they allow their own children to be neglected or abused or exploited, the answer is NO....if they knew that was happening to their own children could they do something about it, the answer is YES.
Why is it different for someone else's child than your own?
The detail is, these children are just like yours, with all the bad bits that your good parenting protected them from. It was you as a parent that protected them from harm...it was your good upbringing that gave you the skills to be able to protect a child from harm...
The children I look after are all different, have all had different experiences, but they all share a common base, they know fear, and pain, and neglect, and abuse...they only know that people hurt them. They don't know how to trust. Why would they. The people they trusted the most also let them down the most.
Fostering is about change. Its about proving to a child that life is not what they think it is. It's about being prepared to show them no matter how hard they try to show you youʼre wrong. Its mostly about patience, and consistency, and honesty. Its also about being like a swan......calm on the surface and all that......
Its the part the children donʼt see thatʼs perhaps the most important, The ability to be professional in the face of hostility or conflict. The ability to challenge poor decisions and poor practice. Being the person who fights for whatʼs right not whatʼs cost efficient. The person who retains balance and common sense and the over riding desire to speak for and defend a child who canʼt defend themselves. The doing whatʼs right not whatʼs easy.
Sound dramatic?.. itʼs not really. Itʼs all about working together with other professionals for whatʼs best, and doing so when not everyone agrees. In this process the foster carer is the most important person in the room. Youʼre the one with all the facts about that child, you live with them, and you make the most difference to them with what you do every day.
Fostering isnʼt for everyone, some people canʼt deal with the realities of what these children have faced, or the realities of trying to repair it. I wonʼt say itʼs easy, itʼs not. It is challenging, and can be stressful. Itʼs in no way easy money.
For me, when you help these kids heal and grow and thrive, and you see it. Itʼs worth it. Are they always grateful, no, but its not about gratitude, its about the long term future, and the kind of society we want to live in, and breaking the repeating patterns of these families.
Itʼs about making lives better....thatʼs enough for me.
Unequal opportunities... Unexpected avenues by Jon Powton
As a sufferer of Becker Muscular dystrophy I have had my fair share of doors slammed in my face over the years.
It has always been a bug bear for me that despite my qualifications and my experience in engineering that my disability has been such an obstacle for potential employers. It’s amazing how attitudes change when disability gets mentioned...and how continuous rejection eventually made me stop trying.
I am sure in this I am not alone...I can say with a fair amount of confidence that many disabled people face this kind of attitudinal prejudice, and are not truly offered an even playing field.
Wouldn’t it be refreshing to find a path where not only are we given the same chances as everyone else, but where overcoming the struggles of disability can be used in a positive way. My illness has changed the way I think. My whole adult life has been about challenge and obstacle and how I have to do things differently from able bodied people, in short it has given me a unique set of skills. I’m more thoughtful, honest, organised, introspective and determined, and perhaps most importantly I’m more caring.
5 years ago I became a foster carer with The National Fostering Agency, my disability has not been a barrier for me. I foster children on my abilities not my disability. The fact that my illness inherently gave me some of the skills needed for this job, is I suppose ironic. but it’s a fact. I followed the same assessment process as every other carer, no special treatment, but most importantly no pre-judgements. I was told, “If you’re capable, and have the right skills and meet the right criteria. You can foster”.
I found the allusive fair crack of the whip.... Fostering disadvantaged children is a privilege, it’s the hardest job in the world, but is by far the most rewarding. It is also a professional role, just as is a doctor or a nurse or a social worker, and as such commands a professional salary. No-one fosters for the money, but no one would do it for free, it’s a career, and it has to pay the mortgage. FACT.
Fostering is not for everyone, but maybe it’s for you. I am striving to give disabled people the information, there is an avenue that maybe you have never considered, that is actually willing to consider you. Without bias, without saying no just because you have a disability. You may still be told no, but the reasons will be considered, in a fair an equal way.
If you think this is for you, or would like more information. Disabled or not. Please contact The National Fostering Agency at www.nfa.co.uk
Driving with a Disability - 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.
For information about other assessment centres visit www.mobility-centres.org.uk, The Forum of Mobility CentresBridgewater 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
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.
For information about other assessment centres visit www.mobility-centres.org.uk, The Forum of Mobility CentresBridgewater 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
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