February 2004 Newsletter

It was so nice as all you female members will probably appreciate (not that I’m saying men don’t do anything in the kitchen ha! Ha!) With mobility problems being able to get up in the morning & just relax & let some else spoil you, I would recommend it to anyone, & we will certainly be doing the same thing next year. Members have all in all probability acknowledged the new format of the newsletter. The reason being sending out newsletters electronically is to cut down on stationary costs. Members who do not have computer access will still continue to receive your newsletter via Royal Mail. I am now going to dig myself a big hole, but what the heck! I would like members feedback: “Do you like it like this” or “ Did you like it like that” But I would like to express my sincere thanks to Ian (Bennett) for taking the time to enlighten me on computer technologies that I was not aware of, & for giving me time & support, thanks Ian.

On a more cheerful note, our very own David (Pearce) & myself were having a chin wag recently, & I happened to ask him when he dreams is he always able – bodied. When I dream I am! It would be interesting to produce an article in the following newsletter as to how many members have his experience. So “dream on” & please give me some feedback, this could be very interesting!

I don’t know how many members may be aware, who have children, partners or family who you are caring for that in times of need there is a service if you are under duress, you can get help via your local council. There is what is known as a carer’s counseling service, the aim of the service is to provide high quality, short term counseling for carer’s, irrespective of the condition of the person cared for.

As a carer, you may need to seek counseling because you are:

  • Experiencing feelings of anger, sadness or guilt due to your dependant’s disability or illness.
  • Adjusting to the role of being a carer.
  • Having problems coping on a day–to–day basis.

It is a free service, & if you are having problems with any of the above issues, contact your local council who I’m sure would be more than willing to assist & guide you further. All the best for 2004, Take care, Sharon xxx.

Useful information

Radar key

If you are not already aware, & you are registered as being disabled, you are entitled to a radar key. This key entitles the holder to use disabled toilet conveniences throughout the world. As many of us are probably aware, central town center communal toilet facilities are not always clean, tidy, or by all means appropriate for our needs. This key is available from Radar or your local council (I was advised the reason for these keys being issued came about was because of the increase in vandalism) I found the staff to be very helpful & informative, & all they will ask from you is some form of identification. I have found this key invaluable, especially when traveling long distances, as unless you have a radar key you will find almost all disabled toilets are inaccessible (especially at night).

Motability scheme

The Queen, who is Motability’s Chief Patron, marked its 25 anniversary by handing over vehicles to six customers & their families at a special event at the Royal Mews, Buckingham Palace, in the summer.

Motability was founded 25 years ago & currently has 400,000 people in it’s leasing (“contract hire” to be more accurate) scheme. It is the biggest fleet of vehicles in Europe. And yet the rest of Europe, which has 37 million mobility-impaired people, doesn’t have anything like a comparable scheme to Motability.

So, while the D.D.A. has never shirked from criticizing the unhelpful & unsatisfactory aspects of the scheme, & will continue to do so, it is entirely right that we congratulate Motability on its anniversary & acknowledge the unparalled contribution it has made to improving the lives of disabled people & their families over so many years.

However, its unique partnership with the major clearing banks, & the government, is what enables it to operate. The banks provide the funding (a mind boggling current amount of £2.3 billion –yes – “billion” not “million”) & the government pays over the Motability component as sanctioned by the individual customers of the scheme.

The affordability of the scheme is assisted by major concessions, such as exemptions from VAT & special car tax. In addition, the car manufacturers & dealers contribute substantially by discounted prices & reduced margins.

It just so happened that, when Motability was being formed in 1977, I was DDA National Chairman & in that capacity, along with the Chairman of the Disabled Drivers ‘ Motor Club & the Chairman of the Joint Committee on Mutability for Disabled People, - offices which I & they still hold. This has ensured that the specific needs of users of the scheme have, throughout, been represented at the highest levels within the organization.

Recent major improvements to the scheme (which were long overdue) have been reported in recent issues of Magic Carpet, & more enhancements will be made. Motability has set itself a challenge to deliver” world class” customer service so, in all, we can look forward to even better times in the future.

Taxi tokens

For short trips to work, shops, hospital appointments or going down to the pub to let your hair down. If you are registered disabled you are entitled to £30 of taxi tokens & also a bus pass per year. All you have to do is produce to your local council offices evidence i.e. your social services disability card & they will normally issue you with them automatically. Take note that different councils may deal with this matter at dissimilar times of the year but I have been advised it is more often than not around the months of June-July for most applications to be adhered to.

Code of practice for class 3 vehicle users

What is a class 3 vehicle?

Three types of ‘invalid carriage’ are defined in “The Use of Invalid Carriages on Highways Regulations 1988”.

  • Class 1: - Manual wheelchair, i.e. self-propelled or attendant-propelled, not electronically powered.
  • Class 2: - Powered wheelchairs & scooters, for footway use only with a maximum speed limit of 4 mph.
  • Class 3: - Powered wheelchairs, & other outdoor powered vehicles, including scooters, for use on roads/highways with a maximum speed limit of 8 mph & facility to travel at 4 mph on footways.

Where can class 3 vehicles be used?

They can be used:

  • On footpaths, pavements, bridleways & pedestrian areas at a maximum speed of 4 mph.
  • On most roads at a maximum speed of 8 mph.

They cannot be used on motorways, cycle lanes or in bus lanes (when in operation) nor is it advisable to use them on unrestricted dual carriageways (i.e. those with a speed limit of over 50 mph). If they are 4 – wheeled vehicles, then they must use an amber flashing light for conspicuity when used on dual carriageways.

What are the legal requirments?

A class 3 vehicle is not legally defined as a motor vehicle & therefore, the user is not required to have a driving license or to take a test. The vehicles themselves are not subject to Vehicle Excise duty (“road tax”) or mandatory insurance requirements.

A class 3 vehicle can only be used by a disabled person aged 14 or over, or by an able – bodied person who is demonstrating the vehicle before sale, training a disabled user, or taking the vehicle to or from a place for maintenance or repair. If these conditions are not met, you are liable to prosecution by the police.

Should I have insurance?

Although it is not a legal requirement, an insurance policy is strongly advised. Suitable schemes are not too expensive & are available to cover your personal safety, other people’s safety & the value of the vehicle.

What should i do to prepare myself for the road?

If you are using a powered vehicle for the first time, or if it is a while since you have driven on the road, you are strongly advised to get some training. For details of courses, contact your local Disabled Living Centre, Mobility Center or your local authority’s Road Safety Unit.

For further information about the safer driving of class 3 vehicles, you can contact:

The Mobility Unit,
The Department of Transport,
Room S10/20,
2 Marsham Street
London
SWIP 3EB

Tel: 0171-276-5257.

D.V.L.A.

Drivers are under a legal obligation to notify the Agency or worsening of any medical condition that may affect their ability to drive safely. When a medical condition which may pose a risk to road safety is made known to the agency, a medical investigation is carried out so that a decision can be taken as to whether the driver should be able to retain their license.

General information can be obtained from the D100 booklet, available from most post offices and the Internet; the web site address for further information is http://www.dvla.gov.uk.

More on the Odstock Dropped Foot Stimulator

Introduction

Each year in the UK over 100,000 people suffer a stroke. Of these 30,000 are left with a mobility deficit, typically manifested as a dropped foot. Additionally people who have other neurological conditions such as multiple sclerosis, spinal cord injury, cerebral palsy and indeed, FSP may also have a dropped foot. This means that the individual is unable to lift their foot on the affected side, during the swing phase of gait, leading to the foot being dragged forward, swung out to the side or hitched from the hip. Dropped foot can be due to either the inability to activate the muscles that lift the foot or excessive activity in the calf muscles, causing your foot to push downwards.

The ODFS

The Odstock Dropped Foot Stimulator (ODFS) was originally developed under funding from the Medical Devices Agency in the Department of Health between 1989 - 1995. The Odstock Dropped Foot Stimulator is a single channel neuromuscular stimulator that corrects dropped foot by stimulating the common peroneal nerve using self adhesive skin surface electrodes placed on the side of the leg. The electrical stimulation causes dorsiflexion (lifting of the foot) and when timed to the gait cycle using foot switches placed in the shoe, walking performance can be significantly improved. The device works by causing a contraction of inactive muscles but also may cause a relaxation of the calf muscles. Electrical stimulation feels like pins and needles and is found to be comfortable by most users. The device is designed to allow sufficient flexibility to cope with a range of problems that have been seen over some considerable clinical experience, while remaining simple to use and set up by the physiotherapist.

How to be referred for treatment.

If you think you might benefit from the clinical treatment offered or would like to be involved in one of our research projects, you must first be referred to us by your GP or hospital Consultant. Referrals can be made to Prof. Ian Swain, Department of Medical Physics and Biomedical Engineering, Salisbury District Hospital, Salisbury, Wiltshire, SP2 8BJ. If you would like more information, you can write to the hospital at the above address, or phone on 01722 429065.

Members letters feedback Nov 2003 – Feb 2004

S L writes:

Dear Sharon, many thanks for your Christmas card. I do hope you can put this note in the Feb newsletter. Sally Langton would like to apologise for not contacting any group members over Christmas, but have been in hospital from October 19th until December 29th. I fell & sustained a colles fracture of my right wrist. Through severe lack of balance not only am I totally dependant on walking frames (rectangular & three prong) but due to twisting my right knee many years ago, my right leg is no longer weight-bearing, & so to get up the steps into the house or factory, or from our downstairs loo, I use a handle & pull my whole weight on my right hand, hence weeks in the Leicester Royal Infirmary followed by weeks in a rehabilitation hospital.

I was very impressed by the N.H.S. from the ambulance crew, to the nurses, domestic staff & catering, not forgetting the occupational therapist who provided equipment, i.e. commode handles around the loos, plus a bed-commode which fits level with the top of the mattress. I had a trial one fitted in hospital so had two weeks to practice my “beached whale” impersonation, sliding onto it then back into bed.

My husband Alec, along with a colleague of mine from R.E.M.A.P. built a temporary walkway to our downstairs loo until we can get the floor built up which will be a complicated exercise involving a new gas boiler etc, etc.

I expect it will be a little while before I can get out of the house, or into the factory to continue making walking frame bags for the Red Cross Medical Aid Ability Shop (total sold to date 750 in about 9 years) I do hope you will all have a good 2004.

Kind regards

S.

B R writes:

Dear Mr Fawcett, please find enclosed my very late subscription for 2003. I feel suitably embarrassed that I hadn’t sent it in earlier in the year. Obviously it’s my memory as well as my legs. I would like to be included in future newsletters & mailings; I haven’t burnt my bridges so to speak.

On a separate issue please suggest to your female members who have had problems with incontinence, to try self-catherisation. After so many years of worry & embarrassment, I finally tried this method. I was referred to a really helpful specialist nurse who helped me through the initial ups & downs, & I now self-catheterise 3-4 times a day (instead of getting up 3-4 times per night) what can I say! It has changed my life!! Don’t be put of by thinking it’s too fiddly/painful or awkward – (I know you gentlemen have a more difficult time with catheters) – for us girlies it could be an easier way to improve your lifestyle, once again, sorry about the late payment.

Yours sincerely,

B. R.

M F writes:

Dear Sharon, could you please remind people that over a year ago I had 2–3 days in Skipton Hospital learning how to use a catheter. Likewise I too, had an amazing improvement in my lifestyle. I know only have to empty my bladder 5-6 times daily. I too will answer any queries anyone may have, thanks for now.

Love M F

E H writes

Hi Sharon

I hope this may be of some interest to you and others. I have been introduced to a product that had claims of helping digestion problems. The product is Aloe Vera drinking gel. I didn't expect the dramatic response that it had with my son Matthew.

Matthew is six years old and suffers from FSP. He has, or once had, incontinence problems due to urgency and not being able to "get there in time". At home we dealt with it and nobody had to know, but when he had problems at school it was not as easy to hide and I was worried about dignity issues as many people, not only his assigned helpers, were having to rush to Matthew's aid, including Dinner Ladies. This resulted in other children witnessing and children can be cruel.

Due to aloe vera's high nutritional content, including vitamins, minerals, and amino acids and other healthy things, I put the whole family on Aloe Vera drinking gel. Most of them taste awful but the "Bits and Peaches" is quite sweet and palatable. I personally prefer "Berry Nectar".

Within a month Matthew's toilet control had been radically improved! We have had only one accident. This happened after we ran out of juice and we were waiting for the next. He still needs help but Matthew can get there by himself and we follow. No more mad rushes and getting there too late.

I was so impressed I also joined the company who supply the juice and I am now an independant distributor for Forever Living Products. My job is to promote all their products ranging from drinking gels to creams, nutritional supplements to Honey bee products.

N B writes:

Sharon keep up the good work on your newsletter, I was very interested in your feature on useful “benefits”. I attended a pension seminar last month via my employer. Did you know that if you complete a certain form quote ref no: BR19 you could have a quote on what your weekly state pension will be when you retire? This can be obtained from the Pension Service, RPFT, Tyneview Park, Newcastle upon Tyne, NE98 1BA. Tel no. 0845 3000168 (local rate). Office hours Mon-Fri 8am–8pm. Sat 9am-1pm. The requirements for this quote are that you are more than 4 months away from state retirement pension age when they process your application. If you are within 4 months of state retirement pension you should have received a claim pack. If you have not get in touch with your local social security office. Not a lot of people are probably aware of this I wasn’t.

If anyone is interested I have cured my muscle strain in my left leg & I will be once again taking part in the Working Bikeathon to raise money to fight child Leukaemia. The charity is run by Gary Lineakar & his wife. Wouldn’t it be good if we could do something like this in the future?

I B writes:

Dear Sharon,

As a result of the information that you somehow manage to publish within the quarterly newsletters, I have benefited from the following:

  • Last April, I had cavity wall insulation and draught proofing installed under a grant.
  • I am currently having a home improvement grant processed for an extension to provide a downstairs bedroom, and also to implement some bathroom modifications. If all goes to plan, my life will be made much easier as I will be able to live downstairs (my bathroom is on the ground floor), and eliminate the requirement to ascend and particularly descend the staircase, which is gradually becoming more and more of a problem. A positive spin off from this is that my two daughters (aged 7 and 10) are getting very excited and looking forward to the upstairs accommodation becoming an adult free zone.
  • Last week I received a R.A.D.A.R. key from my local council. I applied for it by email, and it arrived in the post the following day.

As you can imagine, I am massively grateful for the information that you have provided. It’ll certainly make my £15 annual subscription to the group seem a very shrewd investment when my extension is complete!

I’m sure that we have members who aren’t totally aware of what’s available to them, so the newsletter is the ideal tool to transmit this information. I personally don’t think you should be afraid to repeat some of the articles as a reminder to those who don’t readily act on some of the opportunities, and also, to cater for new members.

Keep up the good work Sharon,

I B

Northern Conference

We are proud to announce our second northern conference: 5th June at the City Church, Jubilee Centre, Wilson Road, Sheffield.

This building was formerly a Jewish Synagogue, but during the last three years it has been refurbished & extended to become the City Church. There is a large meeting room which can be portioned off to reduce its size, there is a separate coffee bar adjacent which is ideal for lunch & refreshment breaks.

There are ladies and disabled toilets on the ground level, but to reach the gents toilet you will unfortunately have to go up 2 steps. There is parking for approx 12 cars, on 2 sides of the building, and then further parking is available in Wilson road. It is thanks to our very own Kathy Chambers that we have been able to organize this very important event. Wilson road is off the main Ecclesall road (A625) which runs s/w from the city center towards Derbyshire. (i.e. it’s about 4-5 miles from the main railway station).

It is proposed that our meeting starts at around 11am & finishes at 4pm.

For those coming by public transport, the train station & the interchange are both adjacent, & both have taxis on call.

There are in the area some modern hotels nearby, equipped with lifts & car parks. There are a few other hotels near the city church, but unfortunately none of them have lifts & car parking is very limited.

Sheffield is a very hilly city, so be cautious. However, for those of you who have time to linger, to look at the sights, new buildings are going up everywhere including the Millennium Galleries, the Winter Gardens, & also an attractive peace garden fronting the City Hall.

Sheffield is now England’s 4th biggest city & there is a real buzz about the place. There will be no restrictions on entrance to the conference, but if you are interested in attending would you please complete the attached form & return it to Mike (Fawcett) or Kathy (Chambers) as soon as possible please. Your co-operation in this matter would be very much appreciated.

Thank you.