Like a landscape of overnight snow with not a footprint yet to disturb it, the NRCP's new On-line Forum is ready for the first users. This is for any subjects as they relate to rehabilitation following paralysis, so covering disabilities, the need for care and carers issues, technical therapy points, returning to work, and so on.
We have arranged this facility to give you all the opportunity to meet others, discuss situations and events, place requests, leave offers, or put a direct question to one of our experts for a reply.
With that, of course, there will also be the opportunity to learn and discover various things from the previous messages, questions and answers of others, as all texts are available for viewing and/or replying to.
The link for your Forum is in the main menu of the website at www.nrcp.co.uk
2. PHILIPPA HERBERT – BEATING THE ODDS - An amazing history of how Philippa fought back from spinal injury...
Philippa Herbert is one of those people with enough determination to win wars and enough energy to light a small town. Which is just as well, because in the last six years she has had to deal with some of the cruellest challenges imaginable.
A former City investment manager, a magistrate, wife and mother, who has juggled all the demands of modern life, in 1994 she decided to add horse trials and eventing to her skills. Eighteen months later she fell from her horse and collided with a tree, knocking her vertebrae out of alignment and damaging the spinal cord.
Emergency treatment and then a five-hour operation concluded with the insertion of a stabilising metal frame in her back. This was followed by a six-month stay in the Southwest’s spinal injury unit at Salisbury Hospital. The prognosis was not good - chronic paralysis.
Philippa grappled with the implications of her new condition on a daily basis through the long months of rehabilitation. As she puts it, "There is a strong wheelchair culture in hospitals, and people with spinal injuries are encouraged to be passive. Patients are repeatedly reminded of things they will never be able to do again – activities that the rest of us take for granted; actions and capabilities that help us to define ourselves."
So she left Salisbury convinced that there had to be more, yet unsure where to find it.
Ironically, a year before she took up her sport, a clinic opened in a disused building at Standish Hospital in Gloucestershire that was to become a central plank in her life. The National Rehabilitation Centre for the Paralysed (NRCP) has one aim - to rebuild lives shattered by paralysis.
The origins of NRCP lie in Moscow and the pioneering work of Valentin Dikoul. He had been a trapeze artist with the Moscow State Circus, but became paralysed following a fall during his act. Over seven mentally and physically painful years he struggled to devise his own rehabilitation programme. He developed a comprehensive course of non-invasive exercise therapy - no drugs, no surgery - that enabled him to rebuild his strength and maximise the potential of his paralysed body.
He then persuaded the Soviet authorities that he could do the same for other people and eventually opened his now world famous clinic. Some 12 years later, NRCP founder, David Heard visited the Dikoul Institute. As Heard says, "I had visited every spinal injury unit in the UK and had never seen anything to compare with Dikoul's clinic. There was no high-tech equipment or hugely scientific approach, but the work-rate, the commitment and the results were staggering."
So much so that in the following year Heard helped to arrange for forty-five spinal cord injured people from the UK to attend the Dikoul Institute.
Realising that this was only a short-term solution he then decided to bring the treatment to the UK. So in 1993, with the help of three Russian therapists, using the same techniques, approach and attitudes that had made the Moscow clinic such a success, Heard opened the NRCP.
Since those early days the therapies and treatment programmes have been developed and refined – from hands-on experience, case studies and self-funded research. There are unique techniques employing specially designed equipment for treadmill walking and cardio-vascular exercise, specialist hand and foot clinics, electro-therapy and other treatments. But the underlying principles remain - to optimise the functional ability of the paralysed person.
One of the earliest clients of NRCP came from the Salisbury Spinal Unit and so word got back to Philippa. She recalls, "When I heard about the NRCP approach and the theory of intensive therapy I felt it had the potential to help me."
She came to the Centre, met Heard, saw the work in progress and decided that it was for her. She came initially for a 13-week Foundation Course and after was able to report: "Significant progress has been made. This includes an improved sense of feeling in both legs and feet, the ability to stand and general health improvements."
This latter aspect is not insignificant, as Philippa explains, "Exercise helps to reduce the frequency of minor ailments that can plague the lives of the wheelchair-bound."
That was four years ago and Philippa followed this with regular visits to the Centre to improve her technique and develop new strengths and skills. Through the use of treadmill therapy Philippa has regained the step function. This, in conjunction with the increase in her strength and muscle tone, has enabled her to walk short distances on crutches – a sensation she feels is underrated, emphasising that "The sense of being upright is so important to me."
But there are other aspects of the Centre's approach that she values. "NRCP has allowed me to keep my humanity. Disability can easily force one to lose regard for oneself, one’s past, one’s future, gender, and expectations – people refer to you as ‘the wheelchair’. At NRCP they acknowledge that you are an individual, which has a tremendous effect on your morale - devoted attention is paid to your legs, whereas in hospital you are conditioned never to think of them again."
It is this individual and holistic approach that is at the core of the Centre beliefs. David Heard explains, "We seek to optimise the capacity of every client. Goals are set collaboratively between client and therapist, ensuring that rehabilitation is directed towards helping the client to master skills that he or she values, and is likely to use in everyday life."
"Our programmes are hard work and there are no guaranteed outcomes. But all of our clients make progress. The scale of satisfaction with that progress is a very personal judgement, and ultimately is down to the individual client. It is the relevance of that progress to the client’s own life that is most important."
Philippa concurs and is now a strong advocate of NRCP’s methods. "Even the most severely disabled person will undoubtedly benefit from the work done there. It is by no means a miracle cure, but NRCP is most definitely a really amazing place."
Part of those methods is to design a home training programme for all clients. It is a testimony to Philippa's drive and tenacity that, with the support and skill of her personal trainer, Dave Smith, she has carried this out relentlessly. Heard is convinced that "the key to her continuing improvement is this consistency and continuity of effort."
Most importantly, Philippa is now back to doing some of the things she loves – including riding – swapping her wheelchair for horseback, and feeling free, temporarily released from her immobility. "I am now doing things I never dreamt possible. And when I am back on my horse I forget completely that I am a paraplegic."
To find out more about the National Rehabilitation Centre for the Paralysed, please call 01453 887 390, email email@example.com or check the web www.nrcp.co.uk
Ricability is a unique charity that researches and publishes unbiased consumer information on products and services to enable older and disabled people to live more independently. Ricability assesses products and services for their ease of use if you have limited mobility, poor grip, poor sight or are hard of hearing.
The research is always carried out with disabled or older consumers. The information is produced as a free, colour booklet to provide you, the consumer, with some independent guidance. You can use the guides to compare products and to find out more information. So, if you are looking to make that all-important purchase these guides could help with some useful tips.
Some are available on the Internet atwww.ricability.org.uk
Ricability has assessed domestic appliances - ‘Making Washing Machines Easy’ (2000), ‘Making Vacuum Cleaners Easy (2000)’, and ‘Making Microwaves Easy (2000)’ are on web-site. Though some models have changed the information is still useful. Other guides cover irons, electric kettles, toasters and tumble driers.
Inevitably, products change but in some areas not as rapidly as you might think.
The Ricability Ability guide to stairlifts published in 1997 is still the only independent consumer research in the field. It has information to help you choose, how to get one and still useful advice and tips from over 100 stairlift users.
Ins and outs of choosing a car, 1996. This booklet gives advice on what features to look out for if getting in and out of a car or driving one. Includes information on techniques of getting in, details of aids and a run down of some of the ways cars can be adapted along with where to go for more information.
Getting a wheelchair into a car, 1999.Test results of 20 devices to help get a wheelchair into or onto a car – interior hoists, rooftop hoists & racks.
People lifters, 1999.This provides details of the types of devices that help wheelchair users get into a car and has test results on 8 lifting devices.
Communication mattersRicability’s has researched telephone services and community alarms:
‘It’s your call – a guide to telephone services for older and disabled people (2001’)explains what the eight major phone companies offer and the extra services available and how to go about getting them.
Calling for help: a guide to community alarms, 2000.These alarms make it easy to call for help at home. The report gives general advice on choosing and using an alarm with full test results of 16 models.
Parents with disabilitiesRecent research with Disabled Parents Network (DPN) is to evaluate the ease of use for disabled parents of various items of childcare equipment. At the moment they are researching baby slings and carriers. The findings, available in Spring 2002, will help parents to choose equipment that suits their particular needs.
For more information and a full publications list contact Ricability, 30 Angel Gate, City Road, London EC1V 2PT Tel: 020 7427 2460.
Textphone: 020 7427 2469 Fax: 020 7427 2468, e-mail:firstname.lastname@example.org web-site: www.ricability.org.uk
4. SUCCESS STORIES - Share with others any good news you may have.
7. WAACIS- Low cost Internet tuition for physically disabled and sensory impaired people in their own home.
WAACISis a London-wide charity (Registered Charity No. 1070571), which provides low-cost Internet tuition for physically disabled and sensory impaired people in their own home.
The WAACIS course is designed for beginners
and consists of ten sessions of one-to-one home tuition and, apart from a
one-off registration fee of £5, is free for those whose income after tax is
less than £150 per week. All we ask on the technical side is that students
have access to a reasonably up-to-date computer and a modem. Once this is
established potential students are visited in their home for a Preliminary
Assessment session to assess their suitability for the training course.
The range of topics covered is geared to the needs of the individual student and includes tuition in surfing the world-wide-web, exchanging email messages with friends, on-line shopping for goods and services, and the use of chat-rooms. Our network of carefully selected tutors have excellent technical ability and good teaching skills, and many have specialist experience of working with the disabled. In particular, tuition of aurally and visually impaired persons.
The WAACIS service using freelance tutors was started in 1999 and welcomes applications for study from any physically disabled person living in one of the London boroughs. You can learn more about WAACIS from our
information-packed website. The address of which is