Thursday 1 December 2016

Rosie without a Ramp - Rosie Lawy 

In these extracts from Rosie's blog https://rosiewithoutaramp.wordpress.com/ she shares her recollections of coming to terms with using a walking stick before she used a wheelchair and finding a ramp so that she can visit friends in their homes. To date the search for a ramp has been unsuccessful but has found the journey a learning experience. I am sure that Rosie would welcome suggestions if any reader has experience of a suitable portable ramp.

Hi, I’m Rosie and I use a wheelchair.  Confession’s over.  I don’t like it when people say I am confined to a wheelchair, because for me, my wheelchair gives me freedom to move about my own space and to travel into the wider world.  My latest obstacle is proving difficult to overcome and lies behind my reason for starting this blog.  I find that I often cannot visit friends in their houses because there are steps up to the front door and over the threshold.  I have been looking for a ramp that is light enough to carry on the back of my wheelchair but is robust and flexible enough to cope with me and the weight of the chair and with varied heights of steps.  No success so far.

But I realised that up to the point of researching ramps, I have gained a lot of knowledge and information about negotiating the world as someone with a disability.  I hope that this blog may be of help to anyone with an interest in alleviating difficulties for someone not wholly able physically, by giving them the benefit of my experience.

For the time being, I’m going to call my blog Rosie without a Ramp. I hope to be able to change it one day.

And I hope you begin to understand my personal motto, Movement is Life, and will adopt it for yourself.

Sticks

Yes, I’m Rosie, still without a ramp, and, as you know, I use a wheelchair.  But it was not always so.  Despite falling over my feet, foolishly I did not use anything for many years.  Then I finally decided this was silly and started to use a stick.

As I was a teacher, my stick had to accompany me into the classroom, and I was very worried about the children’s reaction to it. Now I think that this was probably a way to displace my own unease at admitting that I was unsteady on my feet.  Anyway, I called my stick Wacky and took him with me to work.  He soon became known as Wacky the Iraki  –  a good, short, northern ‘a’ in Iraki for the rhyme, and a ‘k’ instead of ‘q’ for looks.  As you can probably guess from that use of a gendered pronoun, my stick became more than a mere inanimate object in my classroom.  The nickname came about because it was around the time of the first Iraq war and the children already knew that my family was from Iraq.  Wacky was very helpful in pointing out where Iraq was on the map and in helping my pupils to understand that something happening far away touched the lives of children and families just like them.  So, Wacky became not only a teaching aid but also an aid to me, giving me back some independence I felt I had been losing.

Back to the practicalities of sticks! First, use one if it enables you to be safer as you get around.  Second, use two if it gives you more confidence!  But seriously, for me having a stick, initially only the one, gave me confidence to walk on uneven surfaces without fear of falling.  I could be safe – a stick stopped stones from tripping me up and hurting me!  But, third, when it comes to sticks, getting one that is the right height for you makes a huge difference. Because of my way of walking, kicking out my feet, I needed a stick that was long, so long that it would be unhelpful for someone with a normal gait.  A short stick may make you stoop.  Try out different lengths to work out what is best for you.* Fourth, think about the type of handle you want.  And fifth, don’t be afraid to ask for tips about getting into the rhythm of walking with a stick (or two) and particularly how to use it going up and down stairs.

And don’t forget, movement is life.

*The accepted way to measure the length of a stick is to stand with your arms hanging loose at your side and to turn your hands to a right angle from your body.  The space from there to the floor should be the starting point for working out how long it needs to be. Introducing myself


Best Websites

www.cheshirefire.gov.uk/public-safety 
Fire safety is so important for you and your family. You can request a free fire safety visit that will help you address any fire risks and they will also provide a free smoke alarm. There are similar initiatives in other areas.

www.cheshireeast.gov.uk/care-andsupport/support-to-stay-at-home
If you live in East Cheshire this site has information about support to stay at home such as help with home maintenance, Finding a contractor, adaptations to your home, financial help for home adaptations, telecare and staying safe at home.

www.metoffice.gov.uk/services/mobiledigital-services/weather-app
It isn’t fun being out in severe weather if you have mobility problems. Make sure you stay one step ahead of the weather with the new Met Office weather app. As well as daily weather forecasts it also give you UK National Severe Weather Warnings.

www.nhs.uk (or in Wales www.wales.gov.uk/ immunisation, Scotland www.nhs24.co and NI www.dhsspsni.gov.uk)
Don’t forget your seasonal Flu jab. These sites have more information about seasonal flu.

Useful Gadgets

Electric underblankets
The bees knees I was introduced to electric under blankets following a lucky escape when a hot water bottle burst.  I have a profiling bed and use the back support daily.  The best one I found was the Dreamland fleece fitted electric under blanket.  It’s been fine whilst others kept breaking after a few months.  It has 6 heat settings and can be on for either 1 or 9 hours. I plug it into a timer switch to keep on for 2 – 3 hours, which is enough for me!  You can get them from John Lewis (single bed £40) with a 3 year guarantee. Well worth it!
http://www.johnlewis.com/dreamland16295-heated-fleece-fitted-single-electricunderblanket-white/p2999603#prev 

Message in a Bottle
A free and simple way to ensure that essential information is readily available to the emergency services should you suffer an accident or sudden illness at home. Free bottles are available in participating GPs surgeries, pharmacists, libraries, voluntary organisations and community groups.

Where’s My Droid
Having knocked myself out after a fall it seemed a good idea that I had some way for people to find me. The last thing I wanted was to lose my independence. I installed a free app called Where’s My Droid on my phone. It uses the GPS on the phone to shown the location on a Google map. If the battery runs out it records the last location. Also great if you lose your phone. www.wheresmydroid.com

Samsung phone voice activated camera mode
Do you struggle taking photos with your smart phone?  Keeping a steady hand, shaking it when you press the shutter button?  If you’ve a Samsung phone, you might have a ‘voice activated’ mode built in.  It’s great – you just say the word ‘smile’ or ‘cheese’ and it takes the photo automatically.  It can be used to take videos, use the timer mode or go to the gallery too. To switch it on, open the camera and click on settings (the cog) then the 3 dots.  Look for a microphone symbol that has ‘voice control’ under it – then tap it to switch it on.  Or depending on the model you have, touch the > in camera mode and then an icon with a microphone. Simples!   
More details are on the link below http:// www.samsung.com/us/support/answer/ ANS00040476/ 

Do you have any items that are great that you’d like to let us know about? Please contact the One Voice team!

Benefits ofRowing Machines by Karen Pritchard and Sanjay Vaja

The health and fitness benefits of rowing machines are much the same as those of water-based rowing, with a few bonus benefits that shouldn’t be overlooked.

Improves Cardiovascular Fitness 
Whenever you perform sustained exercise that increases your heart rate and breath volume, you’re working on your cardiovascular fitness. Rowing is great for the heart and lungs because it engages every major muscle group. That, in turn, requires your heart to pump more blood to your working muscle tissue delivering energy and nutrients to your cells while buffering away waste by-products, including carbon dioxide and lactic acid.

The body is incredibly efficient, and doesn’t like to exert itself, so when forced to work harder than it’s used to, it makes physiological adjustments so future exertion feels easier. When your heart pumps and you breathe harder, your body adapts so that the next time it feels a little easier. Just like that, you’ve improved your cardiovascular fitness.

Increases Total-Body Muscular Strength and Endurance 
Muscular strength and muscular endurance are two different things. In a nutshell, muscular strength is how much weight a particular muscle group is capable of lifting in a single effort – much like a single bench press. Muscular endurance, on the other hand, is how much weight a particular muscle group can lift repeatedly over time. For instance, how long you can ride a bike up a steep incline.

When rowing (as with swimming), you can increase both your muscular strength and muscular endurance because you’re repeatedly pushing and pulling against resistance for the entirety of your workout, spurring physiological adaptations that future exertion feels easier. That said, by increasing resistance over time, your muscles will grow and develop, becoming stronger.

What really makes rowing stand out is that it works your entire body. During the drive phase you’re engaging the major muscle groups of your legs first, then your core, and finally your upper body and back.

Low Impact 
As long as you maintain good form, rowing is easy on the joints. Because your feet remain in contact with the foot pads and your hands keep contact with the handles, there’s little to no impact being placed on the ankles, knees, hips, elbows or shoulders, all of which are prone to injury. This also makes it an appropriate form of exercise for those who are nursing an injury, or who feel physically uncomfortable during weight-bearing exercises.

A rowing machine is available to use here at the NeuroMuscular Centre, just speak to one of the physios and they will advise you and to ensure you’re using it properly. Rowing is an excellent form of exercise, but it’s not without risks. Poor form can result in injury, particularly to the lower back. And, as with any form of exercise, start slow    and work your way up.

Benefits of rowing here at the NMC
I enjoy using the rowing machine here at the centre. I first started to really get into it for Muscle Month. I feel much better in myself, uplifted and motivated, once I have completed my time on it. I started slowly and worked my way up on it. Rowing also helped me lose some weight which was a pleasant surprise!

Hand Washing - A Timely Reminder

Basic hygiene, and in particular hand washing, is not the most exciting thing to talk about, but with cold weather approaching,  and all the bugs associated with it, it seems fitting to remind everyone to be clean-conscious.

Winter vomiting virus can be very serious, and unfortunately cannot be eradicated  by hand gels/wipes etc.  Good cleanliness and handwashing is therefore extremely important.
There are various web-sites available to explain the procedure for hand-washing (just ask ‘Google’), but the basics are: 

• Wet hands completely
• Soap using any type, but plenty of it!!
• Wash hands thoroughly.  You should continue washing for approximately 20 seconds, and a good way of estimating this is to hum the tune ‘Happy Birthday’ twice.  Parts often missed are the back of thumbs and wrists. 
• Rinse all soap off.  If you are particularly concerned, or you have been ill,  turn off the tap using a paper towel.
• Dry thoroughly.

The NMC asks that everyone, including patients, staff and visitors, should be symptom-free from diarrhoea and vomiting  for 48 hours before they attend. Coughs and colds are also a big problem, particularly for those who already have compromised breathing or immune problems and so you are asked to bear this in mind when you attend. 
If you are in any doubt, then contact the NMC for advice, and please let them know with as much advance warning as possible if you wish to cancel an appointment for any reason.

Information Pension for Direct Employer

In 2012 the United Kingdom government introduced new pensions legislation.

One of the requirements of this legislation is that all employers automatically enroll certain employees into a workplace pension.

Disabled People who are Individual Employers employing Personal Assistants will have to consider whether their Personal Assistants qualify to be automatically enrolled into a workplace pension. They will therefore have new obligations to take into account.

Income Tax and National Insurance
If you are an Individual Employer you will need to check whether your Personal Assistant is a “qualifying employee”. All employees who must be automatically enrolled or who have a right to join a workplace pension are put into one of three categories, so you will need to check whether your Personal Assistant falls into one of these categories. They are based on people’s age and their earnings.

How much is the Workplace Pension going to cost Individual Employers?
Contributions are made through 3 different contributors, the Employer, the Employee and the Government. Each contributor will be expected to contribute a minimum amount and these amounts will eventually increase over a period of time.

More information on this topic is available at http://www.disabilityrightsuk.org/individualemployers-and-workplace-pension-schemespersonal-assistants

Volunteering

You may occasionally have encountered a large blue smurf pushing a wheelbarrow around the NMC grounds.

If you take a closer look it could actually be my good-self decked out in bobble-hat, wellies and a blue Barclays Tee-shirt. It pays to dress for every type of weather if you spend any length of time outdoors. Sunglasses and a cagoule are also essentials!

I have been a Barclays Volunteer for at least the last 10 years (probably a lot more) and have worked at various local charities and schools. I have undertaken projects including refurbishing a small-pets enclosure (the pets were on holiday for the day), hand-painting a mural of Noah’s Ark, cutting up cheese and buttering baguettes, serving up portions of Irish Stew, door-steward at Chester Cathedral and last but not least Gardening.

I have learnt many important life-skills over the years:
• If you drop a mobile phone into a 5 litre bucket of magnolia emulsion, no amount of rubbing with a wet rag will restore the phone to its former glory.
• When you and several colleagues are all at the top of pairs of steps ladders, one of the things you don’t want to see at the bottom is an over-excited mouse looking for a convenient exit.
• Mushroom Risotto, if stirred for long enough, is an effective facial sauna.
• If you cut up enough brie you can become lactose- intolerant.
• There is always a nettle or something with thorns in every pile of garden rubbish.
• Wheelbarrow tyres always go flat just when you have a heavy load to move.
• Secateurs have a life of their own and are never where you last saw them.

Many of the people who accompany me on volunteering events are serial offenders and I am lucky that we all seem to want to put in some hard-work, have a laugh together and eat lots of the lovely sandwiches the NMC provide for us. On the odd occasion where some-one has just turned up “for a day off work” they have not returned for a second visit. It has been a pleasure to show my colleagues around the NMC and for them to see and feel a part of the excellent work that goes on there. Many had never have heard of Muscular Dystrophy or the NMC to begin with but over the years they have seen first-hand the difference that practical support can make to people’s lives.

Barclays provides up to £500 funding for every event that comprises of 5 or more members of staff and although the application process can be a little problematic we have always got there – thanks to Claire in the NMC office.  Volunteering allows people to grow in confidence and form bonds with people they would not encounter in their everyday life. It broadens your knowledge and outlook and genuinely gives you a “feel-good factor”. It doesn’t really matter what you do, there is always fun to be had out there and a good cause that will benefit from your help.

Accessible Caravanning by Mark Chapman




Since I was young my family have always had caravans but because I use an electric wheelchair, it is too big to fit in the caravan so I had to sleep in the awning outside.

About six years ago I started to feel the cold more, so we decided that we’d buy a caravan and get it adapted so that I could get inside out of the cold. We had the door widened, a fold up ramp fitted, my dad installed a profiling bed and the toilet was made accessible. Once I was in the caravan we used our portable hoist to hoist me onto the toilet and into bed.

We’ve only ever been away in the caravan around the UK, we’ve been to Silverstone for the F1, Carfest and the London 2012 Olympics just to name a few places we’ve been. However this year we ventured into France, to the Cote D’Azure in the South of France. First we got the ferry over and then on the way down we had three stop offs, the first was   Calais, then Paris, then Lyon and then we
ended up camping in a place called Mandelou - la Napoule just down the road from Cannes. The weather was beautiful, it was very hot just a tad below 36 degrees. Luckily the campsite had its own pool. We took my shower chair so that I could be wheeled into the pool, so I went swimming a few times while we was there. My highlight of the whole holiday though has to be going in the sea. This was possible because all along the beaches there are plages where you can go on the beach, then they have wheelchair accessible beaches called Handiplages, where they have metal runways down to the sea, beach wheelchairs that have giant wheels and floats on and they have disabled changing facilities with showers. We found out that they have these all over the French coast and the beach wheelchairs are free of charge for the disabled. So I got to go in the sea for the first time in 17 years! It was perfect, I could sun bathe and then when I got too hot I would just wheel into the sea. Now that is the life! For more information visit www.handiplage.fr“So I got to go in the sea for the first time in 17 years!”

Keep Strong Bones

Vitamin D helps to keep bones and teeth strong, and improves bone density.

It also reduces the incidence of falls in older people In fact, vitamin D plays a major role in the absorption of calcium and phosphorus, and in their proper utilisation.

We get most of our vitamin D from sunlight on our skin. The vitamin is made by our body under the skin, in reaction to summer sunlight. However, if you are out in the sun, take care to cover up or protect your skin with sunscreen before you turn red or get burnt. Many people can’t understand how vitamin D can be so good for so many different things. Most of the cells in your body, including brain, heart, blood, muscles, bones, liver and kidneys have special receptors for taking in vitamin D when needed, not just bones. That is why the benefits of optimum vitamin D are so diverse. In each case, those receptors are there for a reason, but the reason is different for each type of cell because each cell is specialized for a particular kind of work. If a cell is able to access vitamin D then it performs optimally. If not, it just has to manage without and do the best it can.

Vitamin D is a powerful anti-inflammatory agent, which may also contribute to its effectiveness in reducing some types of muscular pain. Older people with high vitamin D levels lose their muscle mass more slowly than those with low vitamin D levels.

Being severely deficient for a few months may affect your well-being in areas such as:
• feeling depressed
• poor resistance to infections
• increased pain, especially in bones and muscles
• increased inflammation
• feeling tired and sleepy during the day

Not everyone with vitamin D deficiency experiences all of these symptoms. In fact, some people are not aware of any symptoms at all. But even if you have no symptoms, a vitamin D deficiency still increases your risk for many serious conditions.

The symptoms of vitamin D deficiency can be very subtle, and may only worsen gradually over many years. And all of these symptoms can have other causes.

If you notice any of these symptoms – which may be worse in winter when vitamin D levels are at their lowest –  It is always best to consult with your GP if you have any concerns.  There are some rare conditions which can make you hypersensitive to vitamin D
• primary hyperparathyroidism
• sarcoidosis
• granulomatous diseases
• lymphoma
• histoplasmosis
• leprosy
• coccidioidomycosis
• some cancers.

If you have one of these conditions you will be under a doctor’s care and should only take vitamin D if it is prescribed for you.

If you suffer from kidney disease you also need to be careful about taking vitamin D, because of the danger of kidney stones. The reason for this is that vitamin D is a powerful hormone with far-reaching effects in the body. It can affect medications, treatment plans and dosages.
Actually you don’t need to remember these specific conditions, because there is only one general rule to remember:

Don’t take vitamin D if you are being treated for any condition by your doctor, without consulting him/her first.

An interview / profile of Lyndsey Cannon-Potts, our Head of Fundraising at NMC

Tell us a bit about yourself, apart from your incredible fundraising talents? What do you love to do?
I am a big yoga fan and happiest when I’m on my mat. I like to get out and about with my dog Vegas, we can often be found on long walks which usually involve a pub or a café! Travelling is a big part of my life, I’ve previously climbed Mount Fuji, visited the Great Wall of China and bumped into a black bear in America.  

We hear that money is tight in this time of austerity, yet you and the team keep stretching further and further and bringing more money in year on year.  How do you do it?  
There’s no getting away from it we have to work harder than ever for every penny raised now, the charity sector is larger than ever and with pressure on all types of funding streams this makes the challenge huge. The fundraising team is brilliant! It’s not just the 3 of us you see in the office, there are lots of volunteers who most people at the Centre probably don’t see. For example the 60+ volunteers who collectively make Spirit of Christmas be the successful event it is or the people who spare a few hours to man a stall at a local fete – they are all brilliant and we couldn’t possibly achieve what we do without them.

GSK impact award was a huge accomplishment. Anything you'd like to share about that 'experience'?
The GSK/Kings Fund IMPACT Award was a real turning point for NMC as an organisation, it gave us the confidence to stand back for just a minute and reflect on just what a fantastic organisation NMC is. We have grown in confidence as a result of the Award, it supported the belief that we needed to expand and its provided new opportunities. Sitting in the Science Museum in London and seeing the NMC film for the first time was by far the ‘best bit’ of the Award, there on a cinema size screen was NMC in all its glory – a super proud moment!

How did you decide to become a fundraiser and how did you hear about NMC?
Totally by accident! After completing my Marketing Masters degree I applied for a position in the marketing department at former high street retailer Littlewoods and at the same time spotted an advert for a fundraising role at a charity based in Cheshire. I had no idea where Winsford was and didn’t have a good grasp on fundraising if I’m honest. I had interviews for both jobs, was offered both and accepted the fundraiser role at NMC. I had been completely sold by NMC’s atmosphere, it was, and still is, such a positive and friendly place and a world away from a stuffy corporate office environment where I was working. The breadth of the role would be challenging and whilst I had some of the skills required, I knew a lot of learning was also needed.

The chance to do a lot of different things such as PR, marketing and selling tickets to events and pitching to funders seemed a match to my marketing skills. I could see that the impact of successes would impact on people rather than a faceless company – that ticked my box and still does today. I can see clear as day why I’m doing what I do at NMC, gaps in service and provision for the MD community haven’t gone away so NMC needs to continue to do what it does.

You have a love of VW Beetles - any reason?
I’m a bit of a girly girl believe it or not and I think the Beetle is a super cute car, I’ve had 3 so far loved them all and I smile when I’m driving it. Is that a reason?  

You've been 'roped' into some of the crazy NMC challenges over the years - what were they and would you do any of them again?

I think I’ve got away with it quite lightly to be honest! I was sponsored by a funder years ago to abseil down a quarry in North Wales and of course I couldn’t say no. I was terrified when I was on the cliff edge but once I got to the bottom I wanted to do it again with my eyes open! A few years ago I took part in Nightrider a sponsored cycle which was a new event to NMC’s calendar. I managed to complete the 100km overnight cycle through central London along with other NMC colleagues and can highly recommend it. Piccadilly Circus is as busy at 2am as it is at midday!

 Does the new build excite you?  That must be a huge challenge on top of the existing challenge to keep the NMC funded!!
The new build is terribly exciting and has been a totally different fundraising challenge. Funding for the expansion has come largely from funders who would not typically fund our day to day activities which protects the vital day to day funding which is equally as important. The next challenge will be funding a larger NMC - never a dull moment in the world of fundraising! 

How much money have you raised in total - as in while you've been part of the NMC family?
I have no idea I’d like to think its millions. When I first joined NMC 15 years ago the cost of running the Centre was around £300,000 today its a million pounds!

NMC has changed a lot over the recent years - what has been the biggest change you've seen, or the one you're proudest of being a part of?
The expansion project will probably be the largest single change in my time at NMC. A larger NMC means more people can benefit from our services which will be great and I'm chuffed to have been involved in this chapter of the NMC story. 

Hydrotherapy Study - Carley Davies

Having volunteered at the NMC since January, I became involved in helping out in the Wednesday Hydro sessions.

A keen swimmer myself, I really enjoyed assisting, but most importantly, seeing the positive benefits of the hydrotherapy for people with neuromuscular conditions and muscular dystrophy. The physical and psychological benefits were clear to see, and I wanted to investigate the effects further. Consequently, when it came to choosing a research topic for my Masters dissertation, I chose to study the physical and psychological effects of hydrotherapy.

Upon researching the topic, I found that hydrotherapy provision on the NHS is very limited, particularly for people with long-term conditions, and particularly for adults. I found that there were plenty of studies demonstrating the effects of hydrotherapy for people with arthritis, for elderly people, and those with MS and fibromyalgia, but not for people with neuromuscular conditions.

Hopefully, by doing this study I will be able to demonstrate the benefits, and (should the work be published), promote this effective therapy to the NHS and GP’s. My study will consider the acute (that is, immediate) effects of the sessions on participants at the NMC. I have almost completed the data collection with my eight participants, and will hopefully be able to show the impact that it has. My research has involved physical and psychological tests (in the form of questionnaires), and when I have my results, I will be keen to share them with One Voice!

Listening Books

Reading a book can be difficult if you are not able to hold a book or if you have difficulty holding it for a long period. If you have an illness or disability which makes it difficult to read the printed word in the usual way, you can join Listening Books to gain access to over 8000 fantastic audiobooks for leisure and learning, and you can choose from 3 ways to receive your books: downloads; streaming to an iPod or other portable device to listen on-the-go; or if you prefer you can receive CDs through the post.¨

If you choose to download the books, membership costs £20 a year which allows you to download up to two new books every day. For more information visit listening-books.org.uk

Free Public Transport

Bus passes in England
If you live in England contact your local council to find out who issues disabled bus passes in your area as part of the English National Concessionary Travel Scheme. You’re eligible for a disabled person’s pass if you live in England and are ‘eligible disabled’.  The Government website www.gov.uk/applyfor-disabled-bus-pass lets you enter your postcode to direct you to more information on your area.  If you live in Greater Manchester and your pass has been issued by Transport for Greater Manchester you can also travel for free on trains and Metrolink trams in Greater Manchester. There are similar arrangements in other areas.

Bus passes in Wales
If you live in Wales and are aged 60 or over or disabled you may be entitled to free travel within Wales.

Welsh concessionary bus passes are for those who live in Wales and meet one of these criteria:
• are aged 60 or over • disabled – see the categories below 
• injured service personnel or injured service veterans and receive an award under tariffs 1-8 of the War Veterans Compensation Scheme or the Armed Forces Compensation Scheme.

The pass can be used at any time of day. A disabled person may request one companion pass for when they require assistance to travel.

Applying for a pass
The scheme is run by local authorities. Contact your local authority for information about free bus travel and how to apply for a pass.

You will need to provide evidence to your local authority to confirm that you are eligible. Your local authority will issue you with a bus pass (Smartcard) if you are eligible.

Categories of disabled persons
You may qualify for the pass at any age if you come under any of the following categories, to the required level: 
• have sight loss
• are deaf
• cannot speak
• have an impairment with a substantial and long term adverse affect on ability to walk
• are without arms or have long term loss of the use of both arms
• have a cognitive impairment
• would be refused a driving licence due to a condition other than persistent substance misuse
• have a cardiac, locomotor, renal or neurological condition
• receive the mobility component of Personal Independence Payment 
• receive the Higher Rate Mobility Component of Disability Living Allowance.

To find out whether or not you may be eligible you should contact your local authority. You can find out how they determine eligibility by reading the guidance on eligibility on the ‘Guidance to local authorities’ page.

Rail travel in Wales
Where bus services are limited, concessionary travel passes can be used on certain train lines. This is open to all free concessionary travel pass holders in Wales when travelling on these lines. Further details can be found on Arriva Train Wales www. arrivatrainswales.co.uk/ConcessionaryTravel

Alert Cards

Muscular Dystrophy UK has created condition-specific alert cards for different muscle-wasting conditions. These new cards mean that people living with muscle-wasting conditions and their families will have the security of knowing they can easily inform emergency health care professionals of the vital and specific issues that affect children and adults with these conditions.

Alert cards are conveniently shaped to fit inside a wallet and outline key recommendations and precautions that health care professionals would need to know during a time of worsening health.

To make sure the cards are effective they cover a wide range of possible symptoms and situations. The card also includes important contact information on a person’s specialist neuromuscular and respiratory teams, which will ensure expert advice will be much easier to access.

They currently have alert cards covering ten conditions. For more information and to find out how you can get a Muscular Dystrophy alert card visit http://www.musculardystrophyuk.org/ alert-cards/

Prescription Drugs and Driving - Karen Pritchard

It is illegal in England and Wales to drive if your driving is impaired due to having certain drugs in your body, or if you haven’t been prescribed them.

Talk to your doctor about whether you should drive if you’ve been prescribed any of the following drugs:
• amphetamine, eg dexamphetamine or selegiline
• clonazepam
• diazepam
• flunitrazepam
• lorazepam
• methadone
• morphine or opiate and opioid-based drugs, eg codeine, tramadol or fentanyl
• oxazepam
• temazepam

You can drive after taking these drugs if:
• You’ve been prescribed them and followed advice on how to take them by a healthcare professional
• They aren’t causing you to be unfit to drive even if you’re above the specified limits.

You could be prosecuted if you drive with certain levels of these drugs in your body and you haven’t been prescribed them.

The law doesn’t cover Northern Ireland and Scotland but you could still be arrested if you’re unfit to drive.

Informing the DVLA about Changes in your Health - Jon McVey

I like driving, I have always enjoyed the feeling of independence that enables me to do many useful and enjoyable things.

After spending time in hospital following a head injury after a fall I was advised by the doctors that I couldn’t drive for 3 months and  needed to inform the DVLA.  I completed a form B1to report my medical condition to the DVLA.
 
If a doctor tells you that you must stop driving, or if your health means that you cannot drive to the appropriate standard you must surrender your licence.  If you don’t you can be fined up to £1,000.
After I had informed the DVLA I was quite quickly sent a letter which explained that the process would take some time. My details were referred to the medical committee which resulted in additional delays. They wanted additional information including an assessment with my GP. If I had completed the original form with my GP, this stage might not have been necessary and saved some time.  In future I will certainly do this. When the three months were up I still hadn’t heard from the DVLA or received my licence back.  That was a concern as we were about to go on holiday and not being able to drive would have been a problem, so I phoned the DVLA Drivers’ Medical Enquiries line. 

They informed me that this was not a problem as there is a provision in law under Section 88 of The Road Traffic Act (RTA) 1988 that allows you to drive while DVLA processes your application. In practice, this means that when you send your application to DVLA to be renewed and your license expires (runs out) while they are processing your application, you may be able to continue driving so long as your doctor says that you are fit to drive. There are times however when you may need a licence, e.g. travelling abroad or changing your motability car. 

With relief, I finally did receive my new licence. I now have to renew it every three years and have renewed it once. Changes in my ability to use a handbrake meant that again it was a long process, but I was able to continue driving while they reviewed my application and arranged assessments.

Monday 1 August 2016

My Stairlift by Jon McVey

The Spring 2015 edition of One Voice carried two first-rate articles about stairlifts, including Ann Craig’s account of buying her stairlift.  The following are a few random thoughts about my experience.

1. Making the decision.  This took some time, climbing the stairs had become gradually more difficult, but when is the right time to take the decision?  I wanted to continue climbing stairs as long as I could, but the balance though was safety, so after a serious fall we made the decision to do something.

2. Install a lift or move. A bungalow would make life simple, however the decision was easy for us. We like our house, and for reasons of family and children, we need to live in the area for the time being and bungalows locally are in short supply and expensive.

3. Beware of free independent stairlift guides. I sent for a free guidebook advertised in the back pages of a newspaper. I was looking for a stairlift so it seemed like a good idea. Within a few hours I was receiving sales calls, some assertively, even aggressively seeking appointments. By contrast I contacted manufacturers and local suppliers directly, all of which were very helpful. By the way, the guide had no more useful information than any of the brochures.

4. What to do about the door at the bottom of our stairs. The position of the door meant that the rail of our straight lift would be a trip hazard. The solutions were to have a folding rail or a moving rail. The latter seemed like the best option for our household.  The system works well although it makes an annoying beep when it moves. It is another moving part so it does need some maintenance so for piece of mind I have kept a service contract.

5. Style. The numbers of options of colours and designs are sadly very limited, so we decided the colour we liked best and redecorated.  We needed a new carpet, so we had this fitted before the lift was installed. We keep a spare piece in the attic to make good when we move house.

All in all, the stairlift has made my life much easier and there is a sense of freedom. I can access upstairs again  during the daytime  and can again carry things up and down stairs. Little things, but it makes such a difference.



Useful Cooking Gadgets

Waste Disposal / Recycling
www.IKEA.com
UTRUSTA pull out waste sorting tray    £18 each
Holds various sizes of sorting bin that pull out for easy access



Bar Stool and Pull Out Trays
IKEA Franklin Bar Stool  £25 . 
Tray Runners  www.ironmongerydirect.com (fitter made and installed trays in a couple of hours) In the food preparation area I have a stool and two very useful pull out trays that enable me to get my legs under the working area. Of all the extras I have fitted these have proved most useful.


Taps on the Front of the Sink
www.salonsupplies.co.uk
REM Monobloc Mixing Valve in the front and a standard mono mixer tap at the rear. Total cost about £150  
There is a VOLA unit installed at NMC. Try as I may I could not find anything similar but cheaper on line but my solution was found during a trip to the barbers.


Remote Controlled' Cooker Hood
FSH for me means that raising my arms above my head isn't easy. I was quoted £1500 for a fully functional remote controlled cooker hood. Instead I opted for a HOTPOINT hood which I am able to control it from switch which was installed in the bank of labelled switches.

Moving Heavy Appliances on Worktop Bench
SMULA Tray IKEA £1 
I am less able to lift appliances from drawers and a simple solution that works for me is to “store” them out of the way on the worktop is such a way that I can slide them to a more accessible position when I need them. My simple cheap solution another IKEA purchase.

Cooking Baskets 
Pans of hot water are heavy and dangerous. Wire baskets used for frying chips, make it easy to strain the vegetables, as long as they are not peas, without moving the pan.

We are grateful to Rodger Marshall for providing all the suggestions apart from the cooking baskets.
For the next edition we are looking for websites and products along our theme of keeping safe. Please forward any suggestions to jon.mcvey@nmcentre.com

Useful websites - Sports Hobbies and Wellbeing

www.wheelsforwellbeing.org.uk
Think you can't cycle, think again. Wheels for Wellbeing (WfW) is an award-winning charity supporting disabled people of all ages and abilities to enjoy the benefits of cycling.

www.wheelpower.org.uk
This website enables people with disabilities find a sport they enjoy. They advertise opportunities throughout the year to try wheelchair sports.

www.limitlesstravel.org  
Angus Drummond, who has muscular dystrophy recently launched this disability travel website with the ability to rate holiday destinations in terms of accessibility and disability "friendliness".

www.zipworld.co.uk
Fancy plunging to the ground on the worlds fastest zipwire. The Velocity at Zip World Penrhyn, Bethesda is suitable for wheelchair users but only by prior arrangement.

www.livingmadeeasy.org.uk/leisure/equipment 
Living made easy's leisure section provides free impartial information on various items of equipment and some adaptations available to help with a range of indoor and outdoor hobbies.

www.the-dps.co.uk
The Disabled Photographers' Society promotes and supports people with a disability and want to enjoy photography.

Kitchen Tips - My New Kitchen Design by Rodger Marshall

I have recently had an extension to my bungalow to accommodate a new kitchen. I am fortunate in that I had the funds to do it, but I found it very difficult to get any meaningful advice on what to do and what my options there were.  My Local council Occupational Therapist would not help even with the planning stage as I was effectively too well off!  She suggested AKW who install kitchen solutions for people with mobility needs or get some private OT advice.  I called around and became more and more disillusioned with lack of advice in my locality, West Sussex.

I remember visiting the NMC and seeing some of the measures you had incorporated into your kitchen. 

Of all the people I spoke to recently Matthew was the most helpful. He gave me some excellent advice regarding worktops, cupboards and drawers and general accessibility which I incorporated into my design. 

To get some inspiration I persuaded my family to wheel me around the Ikea Superstore in Croydon and looked at online videos. 

I did get some ideas but my budget did not stretch to AKW. In the end I chose a local builder who also happens to be my neighbour to build the extension and fit the kitchen.

My builder uses Howdens to supply the kitchen units and they offer a free kitchen design service. Needless to say that their free service is limited and they have minimal experience designing a kitchen for somebody with mobility issues. 

Prior to the building work I had given the layout a lot of thought and produced my own draft before looking at Howdens plan.  I was able to sit with their planner and their more sophisticated programme and between us we came up with a suitable workable design for the units/cabinets etc.

I believe I have some practical and money saving tips to share with anybody contemplating refitting their kitchen.
   
Matthew strongly suggested having taps at the front edge of the sink rather than the traditional setting at the rear.  After a lot of searching I believe I have sourced a cheaper alternative to the VOLA taps he suggested, saving or rather not spending £400 yet achieving the same outcome.

 
FSH for me means that raising the arms above my head is becoming more and more difficult. Hours and hours searching on internet for remote controlled cooker hoods yielded nothing suitable, but I did find one that will restart on the previous settings if turned off at the mains.

I have found and installed cheap functional plinth heaters to keep me warm and which can be controlled by wall switches.

Pull switches rather than traditional rocker switches are easier to grab hold of and reduce the likelihood of a fall when twisting to turn on the lights on entering a room.   

We utilised the cutouts for the sink and hob to manufacture the pull out shelves and by buying a pair of extension runners from www.IronmongeryDirect.com my builder installed 2 bespoke pull out worktops for less than the 'off the shelf' Howdens price.


Similarly I found that it is possible to install two pull out waste sorting trays side by side under the sink. 

I find the pull out larder units easy to use and access, well worth the investment.

I am sure that like me most sufferers have developed coping mechanisms. But just maybe some of the tips and tricks I have found may help others. Nothing that a competent, empathetic, OT specialist might suggest, but working without this support these are some of the things I incorporated in my new kitchen.

The Shed Club, an interview with Sajay Vaja

 I've been hearing a lot about this 'shed club' at NMC. I've seen the grey 'shed' with the shutter door in the car park. I've seen a variety of good looking, accessible items and really creative ideas for sale too. I was curious, so I caught up with some of the clubbers to find out more....  


Where did the idea come from? 
Sue Walker and Matthew were looking for an outdoor table for the Centre, suitable for both able-bodied and wheelchair users. The cost was just crazy so they approached me (Melvyn) and asked if I could make one for less than that price. So I had a go, and others joined in to help. It went really well...and that's where the idea came from.  

 
Who's in the Club? 
There are 6 of us at the moment and we have many different skills and abilities...we have a builder, a master roofer and a smasher and also others with no previous experience.  

A smasher? 
Yes, Peter - he breaks up the pallets we use for planters. He was a draughtsman and a carer, and used to sit in his car but began by helping us to build the table. We would be lost without him and he loves being involved - like we all do!  


What sort of things have you made to date? 
Well, after the table we've made many planters of various sizes, shapes and colours. We have also made a duck-hut, a very large log storage unit, an electric scooter storage unit, sand pits and planters which are wheelchair-friendly and also a large treasure chest. We have also made a Leopold garden bench, a bird-table and more recently a tray and a vase. We prefer to make smaller items like planters as they are easier to handle and are more cost-effective.  

When do you meet and can others join? Do you need any special skills? 
We meet every Tuesday and Friday, with a 'no lone worker' policy. Our door is open to anyone interested, although there is limited space. No special skills are required other than a good sense of humour!  

Anything else you'd like to add? 
We've raised well over £3000 for the NMC to date and, yes, we do take orders although at times there may be a delay for completion. It has given us all a purpose and a sense of achievement. We have great camaraderie and have all learnt new skills while overcoming physical problems. And we turn trash into treasure along the way. By using pallets and second-hand wood we are helping the environment, and we sell what we make which is a bonus for NMC. If you'd like to get in touch, please come and say hello at the Shed, or through Denise Boyall. 

NMC Titans

The NMC Titans is a newly established powerchair football team based at the NeuroMuscular Centre. The team was set up in January following very successful taster sessions run as part of the summer’s sports days. The team is being co-ordinated by James Taubman (Manager) and Bryn Edwards (Chairman).

Sara Dickinson, a development officer from the Wheelchair football association, helped kick-start the team by providing wheelchairs and other necessary equipment on a fortnightly basis allowing for some initial sessions to go ahead, sparking a fantastic amount of interest from a variety of people associated with the NMC. Unfortunately this has now come to an end and the club now needs to become self-sufficient with their own equipment and storage space, which as you can imagine doesn’t come cheap! Lyndsey Cannon, from the fundraising team at the NMC, is doing a fantastic job applying for and securing funding from various sources.

The team is soon to be affiliated with the Cheshire FA and will soon also be affiliated with the WFA allowing us to make connections with other local teams and begin to look at competing in the regional or national leagues. 

The Titans currently use the sports hall facilities at Manchester Metropolitan University campus in Crewe and are looking to make this the long term training facility with the possibility of on site storage.  

The team so far has had a wonderful response from those involved and others who have heard about it and the Titans are gaining momentum very quickly. It has attracted many people, men and women, from 18 to 53 and keeps on attracting new very enthusiastic members. It is a very exciting and worthwhile venture for the NMC to develop and we hope it will continue to grow into a top league team in the not too distant future.

The NMC Titans are still gaining momentum in preparation to become a regular fixture in the NMC calendar. The team is very grateful for all the money that has been put towards the running of the team and have bought the necessary equipment to begin regular training including sets of goal posts and cones. The only thing missing now is sports chairs. As these are slightly more expensive funding them will take more time however as soon as we have them the Titans we be in full force training in preparation for a competitive future. We hope everyone can get behind the team and the NMC Titans can achieve great things. 

Are you interested in either joining as a player or coming to watch?  The Titans are the NeuroMuscular Centre team and meet at MMU, Crewe Sports Hall. For details contact 01606 860911, james.taubman@nmcentre.com, bryn.edwards@nmcentre.com or see James Taubman or Bryn Edwards at the NMC

Maintaining your Mental Well Being by Karen Pritchard

We all can suffer from the stresses and strains of life, for some of us this can become a huge challenge and quite often leads to changes in our mental health. 

I admittedly find it a struggle with my disability, and often find myself reflecting on the negatives in my life.  In the past, I have suffered debilitating depression. To this day I still take anti depressant's to help with my mood.  I'm not ashamed of this fact, I have a positive outlook to mental health and if you find something that works for you then that's a positive way forward. 

It is so important that you stop beating yourself up.  I'm kinder to myself these days. I praise myself for even having a bath/shower or completing a small task in the home.  I'm even considering a cleaner to give my house a spring clean from time to time.  I did feel a failure for thinking about this option, but again I have to think what is best for my family and I.  

I would often stay at home whilst my family went on trips or days out.  When my pain levels were bad I didn’t want to do anything but stay in bed.  This would spiral out of control, and I would often find myself sad and depressed at home alone living my life on social media!  

Things had to change so, I phoned my GP to see if I could up my pain medication. I also concluded that my pain would follow me around like a bad penny so why not try and get out and about to take my mind away from it.  Rather than it control me, I needed to control it. 

I decided I also needed to take up some hobbies to boost my self esteem and improve my mental well being. At the moment I'm enjoying card making and I donate them to the NMC to help raise funds.  It's a very rewarding thing to do – makes me feel like I'm trying. 
Learning something new, or taking up a new hobby, can also boost your confidence and occupies your mind in a positive and active way. If you want to try a new hobby, think about what you are good at, or things that you have always wanted to try. You can find information about volunteering organisations and local groups, clubs or classes at your local library, in local newspapers or magazines, or online. 

If you are facing a difficult time, talking about the way you feel with someone you know and trust can often helps. Your friends or family may be able to offer you practical help or advice and give you another perspective on what is causing your problems. Even if they can’t help, often just talking something through and knowing that there is someone to listen and understand you can make you feel much better. 
 
If you feel you cannot talk to anyone close, try and think about booking an appointment with your GP.  If you feel like just picking up the phone and talking with someone there are also organisations which can help too. 
 
These include:  
 
The Samaritans 116 123 
Mind 0300 123 3393 

Struggling to drive your wheelchair? by Mark Chapman



Don’t worry there are ways around it. A few months ago I began struggling driving my wheelchair because my hand and my grip had weakened, so I was finding it difficult to move my controller to drive, my hand was forever falling off my control, it was always in need of repositioning and when my hand got cold I couldn’t drive at all. I thought that was it, I wouldn’t be able to drive anymore but it wasn’t. I spoke to my wheelchair dealer who provided my wheelchair and he told me I could get a mini joystick, which is a lot smaller than the usual control and it is more sensitive so you hardly have to move it to drive the wheelchair. This is one of the best pieces of equipment I have. It’s a lifesaver. Depending on the make of your wheelchair there are two manufacturers of mini joysticks, Dynamic for Sunrise Medical and RMS for Invacare, your wheelchair dealer will know which you need.
  
I now have a lot more confidence, I can control my wheelchair 10 times better and I can get around much easier without any worries. It cost around £1,400, I know it sounds expensive but you can get funding for it, I got funding from a charity called React. You can download an application form from http://www.reactcharity.org/applications.php 

Acupuncture - My Experience by Karen Pritchard



I have been having acupuncture for several months now by our Physiotherapist Jonny Smith. This is a treatment that is available to clients at the NMC.
  
At first I was sceptical as I've had this sort treatment before and I didn’t gain from it as much as I thought I would.  Diane Hollister a lady with whom I attend hydrotherapy with had spoken highly to me of her acupuncture sessions with Jonny so, I thought I would give it a go! 

I was on edge the first few sessions.  I found it helpful if I closed my eyes and just simply switch off to everything.  Some days are harder than others but, the end result outweighs this. I feel very sleepy after the treatment, calm and relaxed and my level of pain feels better. I'm able to move my limbs with much more ease. But I would advise not driving home straight away, or if you have to, simply take a break before getting in your vehicle. 

I find that I'm sleeping much better at night since receiving the treatment.  

Diane has acupuncture on her leg and back every fortnight and sometimes her shoulder and finds she has a lot less pain following these sessions along with her hydrotherapy. Diane gains lots of benefits including better nights sleep.  

On one occasion Diane was unable to move her arm in any direction and after one acupuncture session around the neck/shoulder area she gained instant movement along with being pain free.  
I highly recommend this treatment on a regular basis. 

If you are interested please contact Jonny Smith Physiotherapist, NeuroMuscular Centre  
Telephone:  01606 861799 Email: jonathan.smith@nmcentre.com 

Exercise in the NeuroMuscular Centre


Here at the NMC we encourage everyone to exercise to the best of their ability and are set up to accommodate all activity levels. Previously it was thought that doing exercise as somebody with a neuromuscular condition would ultimately do more damage than it would good. However now the research is beginning to show that exercising at the right level for the right amount of time can have huge benefits.  

Some of the benefits of exercise include;  
* Maintaining range of motion in muscles and around joints, as the body moves during the exercises it is stretching the muscles and lubricating the joints. Recent studies have shown that exercise can have a similar effect on the muscles as stretching in terms of maintaining elasticity.  
* Improved muscle strength. Regular exercise will cause any muscles used to change and adapt. Exercising regularly against resistance will cause the muscles to get stronger allowing them to cope with the resistance applied. 
* Improved cardiovascular fitness. As the body is put through exercise the heart and lungs have to work at an increased rate to supply the body with enough oxygen to function. Doing this for a prolonged time can have long term benefits of the heart and lungs being more efficient, reducing heart rate and blood pressure. 
* Weight loss. Regular exercise is a key factor in aiding weight loss and when coupled with a healthy and balanced diet can show fast, healthy results. 
* Anti-depressant. Chemicals in the brain called endorphins which create the feeling of pleasure are released during exercise. This can have an antidepressant effect for an individual. 

 
Here at the NMC, the Physiotherapy team will be able to guide you through appropriate exercises and gradually build up your activity level as your fitness increases. There is a large range of equipment available working all areas of the body.  

We have three sets of "pedals" available to use. These include both arm and leg pedals which can be adjusted to any ability using the different resistance or assistance settings giving the upper and lower limb muscle groups a great workout and challenging the cardiovascular system to provide for the body. Anybody is able to use them whether in a wheelchair or able to walk. 

The cross trainer is a very clever piece of equipment allowing users to stand upright fully supported around all the major joints. It requires a Nordic ski movement, similar to a walk but with no bend at the knees. This is a full body workout which will activate every muscle and work the cardiovascular system to a high level. 

The recumbent bike is similar to the leg pedals however is only available to non-wheelchair users and focuses on lower limb muscle groups and the cardiovascular system. 

The rower is a current favourite in the department. Fully adaptable to all service users it pushes the cardiovascular system more than other machines. The resistance can be changed to suit any level of activity giving the whole body a very beneficial challenge. 

The department is always getting new equipment and is soon to be getting an accessible gym full of machines and spaces to exercise safely under the supervision of the physiotherapy team. If you or anyone who uses the centre is interested in exercising regularly do not hesitate to ask the physio team for any help or advice. 

Bryn Edwards  

My experience of moving property by Peter Marley

I attend the NeuroMuscular Centre regularly for physiotherapy and also work in the graphic design studio.  I have FSH Muscular Dystophy. 

At the start of June 2012 I moved into a new flat at Llys  Alarch, provided by Clwyd Alyn housing association, as I was struggling to live in my house due to the stairs. It was not disabled friendly and I kept having falls, so I decided to take the flat offered to me. 

I have a mobility scooter which I kept outside my flat, under my window.  This was not ideal but, Clwyd Alyn knew about it when they offered me the flat. I kept securely with a cover over it, charged it through the window and didn’t see a problem with that. There simply was no other option as I couldn’t get the scooter in my flat! 

After 3 years the housing officer spoke with me and told me that for health and safety reasons I could no longer keep my scooter where it was and therefore it had to be moved as it was a trip hazard.  I fought my corner and told them that it had been there since I had moved in and which they knew about but, with no luck.  I had to provide the adequate requirements needed by Clwyd Alyn. 
Clwyd Alyn informed me I could stay in my flat if I funded a safe electricity point to the scooter and paving slabs to mount it on.  I wasn’t prepared to do this and it didn’t seem right that I had to fund the works. 



In March 2015 I was offered a flat by Wales and West -  a new development in town with disabled facilities and a communal room to house and charge my scooter.  I would access my new flat via a lift.  I also have a key fob to access the building, and the room for my scooter. 
I decided to take them up on this and moved in on 16th March 2015. 

I did enjoy my time at Llys Alarch but, where I'm at now has much more to offer me.  I'm closer to the town and find that I can get around on my scooter outdoors more accessibly than at my other flat locality. 

I have made lots of new friends since the move and have a better social life.  I've even joined a Gym and accompany a friend to Slimming Word.  I decided to join and have lost almost 3 stone!  I needed to do this for health reasons.  I have achieved this by healthy eating. I'm eating more now than before and the weight it coming off because now I'm eating the right foods. 

I have recently purchased a new scooter - with a difference!  It’s a drive mobility sports rider – which looks like a Harley Davidson!  Its fantastic, and gets admired everywhere I go. I plan to go on holiday later in the year and I'm looking forward to the next phase of my life. 

Fall Monitors - Jon McVey


 

Are you worried about falling? If, like me, you spend time on your own and are at risk of falling, then a fall sensor may help to put your mind at rest. For me, a nasty fall resulted in a couple of weeks in hospital. Luckily my family were about, but after this there was naturally concern about leaving me home alone. This is where we were advised to look at a personal alarm system with a fall monitor.  My system is provided by a local scheme and comes in a package together with a personal alarm button, worn on a wrist band or as a pendant.  The fall sensor is about the size of a small pack of cards and can also clip onto a belt. It is not a perfect system, on occasions it seems oversensitive, being triggered when I sit down, then again I do sit down with quite a thud!  It has worked however, when I have fallen and my feeling is that when it is really needed, it is likely to work. It is another backup if I cannot push my alarm button. Once triggered, a box connected to my phone, calls through to a 24hr call centre and a friendly, reassuring voice comes over a loud speaker.  If I don't respond, the volume increases and then failing any response, they call in help.  My system costs about £23 a month, provided through Staffordshire Housing Association, but it is a price I am prepared to pay to give me and my family a lot of peace of mind.  
 
Telecare assessment and providers 
  
Cheshire East Council        
Telephone: 0300 123 5010 
The Adult Social Care Team run assessments and if you are assessed as being eligible they will pay for the equipment, installation, removal and maintenance. You will need to pay a small charge which covers the cost of monitoring the equipment and any visits that you may need. 
  
Cheshire West and Chester
Telephone: 0300 123 8123 (option two)  
Email: accesswest@cheshirewestandchester.gov.uk 
Telecare equipment will be provided, installed, maintained and removed free of charge. There is a weekly charge to cover monitoring and emergency mobile response. However, not everyone has to pay for their telecare service, as charges depend on individual financial circumstances. 
  
Other councils have similar schemes.  There are also many other providers and details of these can be found at tsa-voice.org.uk/service-provider-directory.

Stadium Design Research

Would you like to participate in research to explore stadium design  and the facilities needed  to enable independent wheelchair access to sporting events?


What represents meaningful provision for wheelchair users in English football stadia?
JEANETTE DODD, Doctoral Researcher, SURFACE Inclusive Design Research Group
School of the Built Environment (SOBE), University of Salford.

Jeanette Dodd, who has FSH MD, is recruiting for participants in her Ph.D research at the University of Salford. If you use a wheelchair to attend, or try to attend, live events at football stadia, are aged 16 or over and would be like to take part, then please contact her at the email address below.

The aim of her PhD. research is to examine what represents meaningful provision for wheelchair users in English football stadia, identifying features that can act as barriers to limit accessibility, or which can enhance accessibility and promote inclusion. The objectives are to:
  1. Appraise how society views disability and how society is including and excluding wheelchair users;
  2. Assess the design process, the legislation, the underpinning regulations, the guidance and how this meets the needs of wheelchair users;
  3. Explore the accessibility of spectator sports and appraise the design guidance for stadia that can facilitate access to it;
  4. Investigate the everyday user experience when attending, or trying to attend football stadia;
  5. Understand how provision at football stadia is determined in practice;
  6. Provide a critical synthesis of the extent to which the needs of wheelchair users are being met; Recommend the changes and improvements that need to be made so that wheelchair users are better accommodated in football stadia.
Jeanette will interview you to capture the everyday experiences of disabled supporters who are wheelchair users. If you have attended, or tried to attend, a live event at a football stadia as a wheelchair user, Jeanette would be interested in hearing from you. 

The NeuroMuscular Centre has kindly offered the use of a private room for the interviews, which should take between 30-45 minutes. Participation is entirely voluntary, although interviewees receive a small ‘thank you for taking part’ gift and travel expenses are paid at 45p per mile. All participants will remain anonymous. Data collected will be kept strictly confidential and will be related to your code number rather than your personal details.  If you are interested in taking part, then please get in touch. 

CONTACT DETAILS: * Email:  j.dodd3@edu.salford.ac.uk
*        Jeanette Dodd, SURFACE Inclusive Design Research Group, Room 423, 
          Maxwell Building, University of Salford, The Crescent, Salford M5 4WT

Sunday 1 May 2016

Holiday in Benidorm

We had a recommendation from Joseph James Cardwell following his holiday at a Service Group Hotel in Benidorm.  Access isn’t just about having the appropriate adaptions, the right training and just the willingness to help are also important.

“In October 2015 I went on my holiday to Spain Benidorm. Everything went ok on the flight, we were picked up on time and taken to the 3 star hotel Helios. Outside and inside the rooms were very clean.  The weather was hot, the food was good with plenty of it and the nightlife stops at 4am, if you can keep up with it. Every day I would go down to the pool in the afternoon and swim for an hour.” 

Joseph was particularly impressed with the support of the lifeguard. While the pool was not specifically adapted, seeing that Joseph was not using the pool, the lifeguard on duty approached him and offered him assistance to get in and out. Being able to swim each day made a real difference to his enjoyment of his holiday. 

Useful Car Products



Pinpoint
Do you have difficulty refilling your car? With a Pinpoint key fob simply press the button and you can stay in the driving seat while a member of staff refuels your car. With over 200 participating garages, the nearest to the NeuroMuscular Centre is at Sainsburys in Northwich. www.pinpointbycontacta. co.uk.

 
Eurokey
Yet another thing to add to your keyring if it doesn’t already look like it belongs to a prison warder.  If you find a Radar key useful and are travelling in Switzerland, Austria, Germany or the Czech Republic you may find that you will need a Eurokey. The universal key gives access to disabled
toilet facilities as well as lifts and cloakrooms. www.eurokey.ch

Pumpkin Universal Air Vent Magnetic Car Mount Holder & Cradle
If you keep loosing your phone down the side of your seat this, useful magnetic gadget sticks your phone on your dashboard.  Sanjay uses his big heavy Samsung Galaxy Note 4 in his VW Transporter. It doesn’t interfere with the operation of the phone or the bluetoothness. The phone stays in place over speed bumps and potholes.  

Useful Travel Websites

3Hfund.org.uk
Last year, 3H helped over 750 disabled people, and their carers, to get a break away. They provide subsidised group holidays for the physically disabled at well researched venues – giving their carers a valuable period of respite at the same time.

lyneal-trust.org.uk
The Lyneal Trust offers adapted canal boats and cottage holidays for day trips or full week holidays in beautiful North Shropshire for people with disabilities, their family, friends and carers. 
abta.com/tips-and-latest/accessible-travel ABTA has a checklist for disabled and less mobile passengers that can be completed and sent to your travel agent to identify your requirements and provide appropriate support.

hoegrangeholidays.co.uk
These attractive log cabins in the Peak District were winner of the 2015 Catey’s Accessibility Award and are one of this year’s finalists of the Access for All Tourism Award. 

openbritain.net
This well designed website for accessible tourism in the UK lets you to filter holidays that meet your specific access needs to find suitable destinations and places to stay, whether this means wheelchair access or bathroom adaptations.  All of the properties are self-assessed, however if you are looking for some extra assurance look out for the Visit England logo on venues that have been professionally assessed.

pitchup.com
Fancy a bit of glamping in a pod in the middle of Wales or a caravan holiday. This site includes a filter for sites with disabled facilities.

accessibleguide.co.uk
Packed with over 200 inspiring ideas for fantastic worry-free days out with reviews, hints and tips on some of the UK’s best attractions written by and for disabled people.

Trains Taxis in the UK by Jon McVey

Rail
Travel assistance is Network Rail’s service to make rail services more accessible for people with disabilities.  If you have difficulty walking long distances, use a wheelchair or scooter the service can help with getting on and off trains. It is recommended to book at least 24 hours before your journey to give time to make arrangements if for example, the station is not step free.

My experiences have been very good, each time an attendant with a ramp was ready in good time to board the train and my natural apprehension has always been alleviated when someone was waiting at the destination station, although just in case, I always carry the Travel Assistance contact number. 

There are reports where people have had  difficulties because the assistance has not been there or they have the wrong ramp for the type of carriage, but for the most part it
seems to work.

For a list of contacts visit nationalrail.co.uk and search for “Information for disabled passengers”

Taxis
I recently visited London to participate in a research project and was quite apprehensive because it was the first time I had gone in my wheelchair and had been told to get a black cab.  At Euston there was a designated rank and as soon as we arrived a cab pulled up and set up a ramp. It was tight but boarding was not a problem. All cabs also have an intermediate step and high visibility grab handles to help people with limited mobility enter the vehicle. I was impressed that on each occasion when hailing a taxi in the middle of London the first available cab always stopped without hesitation, although admittedly one cabbie was enthusiastic to try his ramp having just completed “the knowledge”.  Apparently all licensed black cabs drivers receive training and their cabs are wheelchair accessible.

Saga Respite Trust - respite for older carers

More than six million people in the UK provide unpaid care to their loved ones. This figure is expected to rise to around nine million in the next 25 years. 

Many provide much needed care 24 hours a day with little or no opportunity for a short break, let alone a holiday.

Carers often put their own lives, careers, health and relationships on hold in order to look after relatives. The Saga Respite for Carers Trust was set up to try and help redress the balance by providing a much needed holiday for the carer and a friend. The award also includes spending money and if required the payment of professional respite care for their loved ones to ensure continuity of care.

Award winners come from all over the UK, with most looking to the sun for a chance to recharge their batteries, while others choose to remain in the UK, visiting parts of the country they have longed to see but put on hold while caring for their loved one.

Are you a carer in need of a break?
The period for submitting nominations for 2016 is now open, and will close on 31st August 2016.
The carer should be aged 50 or over, not be a professional carer and have been caring for someone for more than a year without having taken a significant holiday away within the last year.

You can apply yourself or nominate someone you think deserves it. For details, visit: www.saga.co.uk/saga-charitable-foundation.aspx, or send a stamped, self-addressed envelope to: Saga Respite for Carers Trust, Enbrook Park, Folkestone, Kent CT20 3SE, and a paper form will be sent out to you.

If you are thinking of applying for this you will also want to consider a carer’s assessment to look at the different ways that caring affects your life and work out how you can carry on doing the things that are important to you and your family. For more information contact your local council.

Do you need to be Red Flagged? by Karen Pritchard

Do you have adrenal insufficiency or are you a pituitary patient who takes hydrocortisone? If you are then contact your local ambulance trust to Get Red Flagged on their system. If you ever call 999, you will be flagged for priority attendance by a vehicle carrying emergency hydrocortisone.

Adrenal crisis is life threatening.  I had a crisis and it was very frightening - this is why it is so important to be red flagged as a safety precaution.

How to get Red Flagged, E-mail the Pituitary Foundation for a fact sheet on how to do this: emily@pituitary.org.uk or telephone 0117 370 1310 for advice.