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T: 01308 426372 E: angie.coster@shinecharity.org.ukshine50plus.org.uk

Registered Charity No. 249338

Many people we speak to who are living with spina bifida aren’t being seen by specialists regularly to check up on their health. As Patricia Adley, one of our core volunteers says, “It is important to take care of our own health, especially when local health care

may not have expertise in our condition”. With the assistance of Gill Yaz, Health Development Manager for Shine, and staff at the Spina Bifida Clinic at Chelsea and Westminster Hospital, Patricia set out to develop “Taking care of yourself with spina bifida”, a guide written to help people avoid some of the common problems associated with spina bifida, know what to ask their GPs to do, and know how to take control of their own health. Problems with kidneys, skin and tissues, and bones and joints are often experienced by people with spina bifida, and the earlier they are picked up and treated, the better the long-term outlook.

For a copy of this new guide and an accompanying information sheet for your GP, call First Contact at Shine on T: 01733 555988 or go to W: shinecharity.org.uk

Silver Dreams NewsFeburary 2014

Welcome to the 4th edition of the Silver Dreams Newsletter! - written by and for Shine members in the 50 plus age group

Check out your health in 2014! Information for people with spina bifida and health advice for their GPs

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I’ve been in a care home for just over a year and it has worked out quite well. My relatives thought this would be the best thing, as I had experienced a number of falls. I kept having to be picked up off the floor as I am extremely unsteady on my feet. We found the place I am currently living in and I thought, “If I am going to have to move, this is as good as anywhere”, and it is. It’s a brand new place and I have a nice, large room with plenty of space to move around. I can come and go as I please and I have a buggy that I go to the shops on. The staff members are good and you can have a laugh with them. They are very much aware of your individual needs and will pick up quickly on any

health problems, with a doctor visiting at least once a week, which is reassuring.

I’m now 77 and the effects of my spina bifida are more obvious than they used to be. I had an active childhood, riding a bike to school and playing cricket, which I loved. My mother was determined I should have a normal life. Then followed a long, very full career as a youth worker. Many of the kids I worked with are still in touch with me and, now as middle-aged adults, come to visit me. Some of the more difficult young people I worked with used to say, “we can talk to you and you don’t seem to be put off by us”. When I first met the person in charge

of the care home I am living in she said, “Oh I know you!” - it turns out that her children used to be in a youth group that I ran.

We have our ups and downs here. The other residents are from all walks of life and can be very interesting and amusing. I get involved in things and help new people settle in. The staff members always come and talk to me; it can be like running a youth club, as lots of them are young and I end up doing quite a bit of counselling! I also use my relationship skills to pass on constructive criticism where it is needed, for instance about the food. We can eat with others or if we prefer, take meals in our rooms - choice is very important.

When talking about the move recently someone said I had “taken it in my stride” – well, all I can say is that I am a very independent person and it has been some stride!

Taking it in my stride – a member’s experience of moving to a care home by Stuart Wakefield

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Core Volunteer Group Meeting in Petrborough

Towards the end of October a group of Shine members with NPH (Normal Pressure Hydrocephalus) and their spouses met for the first time at the home of Barry Perkins and his wife Dinah, to discuss how support and

By all accounts Alison was a remarkable woman. Born with spina bifida, she later developed other conditions which left her in a lot of pain, but which did not deter her from campaigning for disabled people as well as their families and carers. She is best known for her work as a pro-life campaigner and worked full-time for the Society for the Protection of Unborn Children (SPUC), becoming a major commentator on issues affecting unborn children. She wrote, published and broadcast on the Abortion Act, and Healthcare and Government policies. Most recently, for Shine, she helped with the wording for the Go Folic! campaign.

Alison’s life was not an easy one both physically and emotionally, and there was a time when she did not want to live. However, she went on to find a purpose and good things in her life despite increasing pain, and argued against assisted suicide in the light of her experience. It would appear that even those who disagreed with her opinions maintained a great respect and admiration for her, describing her as “a huge champion of human and civil rights”. She is certainly someone who will not be forgotten.

Have you heard of NPH? by Angie Coster, Project Coordinator Silver Dreams

A tribute to Alison Davis (1955 – 2013)

information can be improved for people with this little known condition.

Many people have never heard of NPH and their GPs may not have come across it. If someone

gets a diagnosis they can be left feeling isolated - and with lots of unanswered questions – as we found out at our meeting! Fortunately we had Rosemary Ellis on hand to help. Rosemary worked as the Principal Health Advisor for Shine for many years and with her extensive knowledge of NPH we were able to put together a Frequently Asked Questions Information Sheet (available on request). We have also been able to link up several people with the condition from across the country.

If anyone would like more information or to have contact with others, please do let us know.

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My name is Susan and I am married to Jim, without whom I couldn’t survive. We have two children, a son and a daughter, and five lively grandchildren who we see regularly. I can’t always do what I want to with the little ones these days but still enjoy their visits.

I worked as a primary school teacher specialising in music for many years and also gave piano lessons outside of school. However, in my fifties I had to take early retirement because I had become so ill. Looking back I realise I had something wrong with me for a long time. It was brewing, it was there, but nobody took any notice. They would say “You’re being silly, there’s nothing wrong with you, you’re imagining it”. I only got by at school with the help of my colleagues who wrote on the board for me! I used to get the most terrific headaches which were put down to migraine. I was sent to several hospitals and was told there was nothing wrong. In the end I got so bad I went to a private clinic in London, arranged through my husband’s work. By this time I was really

How hydrocephalus crept up on me by Susan Weakley

bad, I couldn’t think, I couldn’t do anything, I felt awful. An MRI scan and two days later I was in Atkinson Morley Hospital having a shunt fitted! They’d found out it was hydrocephalus. And I had put up with it all that time and thought I was going barmy. I honestly can’t remember bringing my children up.

For a while I was alright but then became ill again and ended up in Addenbrookes Hospital through the help of Shine. I was given a programmable shunt, but it didn’t seem to be working properly and it turned out this was because they had put it in upside down! I was very disabled when I came home and couldn’t do anything for myself. However, over the last 12 years I’ve gotten a lot better. I haven’t had a headache since, which is wonderful. I use a wheelchair to get around, although I can’t visit my friends unless the weather is fine as I can’t get into their houses! I try to make sure I do things and we go out every day in the car if we can. Through Shine50Plus and the Facebook Group I have made connections with other people which has made me feel far less isolated and alone with this condition.

Shine50plus is changing!

One of the things that members of this group have found

beneficial is the opportunity to have contact with other

members about the effects of ageing. However, for people with spina bifida and hydrocephalus

these effects can start at an earlier age.

In light of this it has been agreed that Shine50plus will be changing to Shine40plus, to be more inclusive to members that would benefit from this group.

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How hydrocephalus crept up on me by Susan Weakley

Did you know that if you are disabled or have a long-term illness you could be eligible for buying some products without VAT for your personal use?

So what type of products? The general rule is that products which are ‘designed for use solely by the disabled person’ can be exempt. Some building works to adapt a property to meet the needs of the disabled occupant also qualify.

Sometimes, it is quite clear that the product should be exempt e.g. a wheelchair, ramp or hoist. But sometimes it isn’t so obvious, and in these circumstances it is for the manufacturer to satisfy HMRC (Customs and Excise) that their products are eligible for relief. Examples could be a vacuum cleaner if you are asthmatic, hearing/vision aids, specialist kitchen equipment, bathroom and kitchen adaptations, recliner chairs, specialist clothing,

Are you entitled to VAT exemption? by Rachel Nicholls, Shine Support and Development Worker

and continence products. Also the repair of these products is included.

How do you get products without paying VAT? You have to claim before you pay, and the supplier will then deduct the VAT from the price they charge you. Usually this is done by completing and signing a form which states you are eligible. However, sometimes suppliers are not sure about the procedure and may not have the right form for you to complete.

There is an example of the form you have to fill in on the HMRC website W: hmrc.gov.uk/vat or you can call their National Advice Service Helpline on T: 0300 200 3700. You can also download a blank form from W: independentliving.co.uk/vat-exemption

A Google Hangout is basically a way of accessing free video-conferencing. At Shine I have been using it for an online support group which is great for members, as it can be done from the comfort of their own home. All that’s needed is a functioning computer (or similar device) and a good internet link, and up to ten people can take part and see and/or hear each other on screen at any one time. I know that some Shine50Plus members have taken part in our Google Hangouts, so will be aware of the benefits. And, hopefully, they will agree that it has been a really relaxed, friendly way of meeting other members. Topics we have discussed so far include spina bifida occulta and shunts.

For some people, it may just feel a little more personal and immediate than some other social media, and a bit more ‘visual’ than a telephone. Some of the feedback has been really positive, and people have shared experiences and, more than once, I have heard phrases like “I had thought I was the only one who felt like that”.

So, if you are an internet user, when you see an invitation to a Hangout – don’t be afraid to give it a go! E: robin.barnatt@shinecharity.org.uk

Have you tried “hanging out”? an invitation from Robin Barnatt of Shine’s health team

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There are all sorts of ways to volunteer and it can be formal or informal – going out to visit someone, joining a local organisation or doing something from home. There are lots of ways to get involved and research has shown that volunteering can lead to better health, not to mention providing an opportunity to meet new people, take on a challenge, be part of your community and have fun!

Here are some of the experiences of our Shine50Plus members:

“I volunteer for the local Age UK office and also support a lady with mental health problems for the local authority.”

“I do a few hours a week in two charity shops which I enjoy – it gives me something to do and keeps me in touch, and more or less sane!”

“I volunteer at Westminster Abbey when other duties allow. It can be a bit challenging getting into London, and there are areas where access in the Abbey is tricky, but I have my ‘spots’ - I am part of a team that helps visitors with questions – it can be very interesting.”

Focus on Volunteering – what Shine50Plus members get up to!

For more information about volunteering contact your local Volunteer Bureau, Council of Voluntary Service (CVS), disability organisation or Age UK. There is also the RSVP (Retired and Senior Volunteers Programme) run by Community Service Volunteers (CSV). This is the only UK wide organisation that offers everyone over the age of 50 the opportunity to volunteer. There are 17,000 volunteers nationally and no one is ever rejected. Disability is not a barrier. Telephone 020 7643 1385 or go to www.csv-rsvp.org.uk

If you are interested in micro-volunteering from the comfort of your own home there are lots of opportunities on this website www.helpfromhome.org.

Happy Volunteering!

“I have started doing craft activities with the residents at a local care home – it gets me out and I am doing something worthwhile.”

“I was a volunteer with the WRVS for a long time after I had to give up work. It definitely helped me. I later helped out at the local Stroke Club. We assisted those who were not able to speak or move about easily and played a lot of games and had quizzes as well as lots of other activities. We

had many a good laugh. I then visited a man at home and helped him to read and write again. I particularly enjoyed this, having been a teacher. I felt useful again. It does YOU good as well as the people you are helping.”

“I love what I do volunteering for Shine helping with running groups – it has changed my outlook and mind so much.”

“I can’t remember a time when I was not volunteering! I was involved in raising funds for ASBAH from the time I was at school as my parents were very involved in the national and local group. Since then I have volunteered in a range of roles for the organisation as well as being on a couple of local Access Committees in different areas I have lived in. For several years I also worked voluntarily as a receptionist for a local disabled peoples’ organisation.”

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Focus on Volunteering – what Shine50Plus members get up to!

1966 - what a year – England had just won the football World Cup! I was eleven years old then and still wearing nappies. I was born with spina bifida – how easy is that to say? Not for me. I was someone who always had the ability to walk so people would say “you look OK to me”, “how do you spell that?” and “never heard of it”. Once a doctor asked me if I was sure I had spina bifida and wanted to see the scar on my back before he would accept that I did!

There was very little advice or guidance for me or my parents as I was growing up. No one understood my condition. I attended a mainstream school where I spent more time hiding rather than learning. I have vivid memories of my time spent there. Queuing up for milk in the morning, knowing I would be wet before dinner; other children asking why there were nappies on our washing line; requests to go to the toilet, only to be told you should have gone at break; not being able to concentrate in class – all I ever wanted to do was go home. If there were any awards to be won back then, mine would be for changing nappies; thick white

1966 and all that! by Peter Wilson

towels fastened on by two big silver pins with plastic pants on top. I can’t say school days were happy, thinking back to all the problems I had. I think I must have used every trick in the book. Fitting in wasn’t easy and things like PE were hard – finding a corner to get changed in so nobody would see me, and of course the fear of smelling.

I’m sure the inability to speak out has affected me – I always felt inferior at school and to be honest I have done for most of my life. Always pushing myself; trying to achieve what most people take for granted. Without wanting to sound bitter – it feels as if you’ve been forgotten. The attitude back then was “we’ve removed the lump on your back and saved your life, now get on with it”.

These days I am learning to be proud of my achievements – I went on after school to work in aircraft manufacturing, married and had a family. However, I look back and wonder how I did it, given all the obstacles I faced.

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To get involved or to find out more about the Shine40plus Project contact Angie Coster, Project Coordinator on T: 01308 426372 E: angie.coster@shinecharity.org.uk

The last 18 months working in a targeted way with the over 50s has demonstrated the capacity of our members to engage in supporting each other, and to initiate action to improve life for themselves and the wider community. Despite the challenges of geographical distance, connections have been made and friendships established. New interests have been taken up and old ones revived, research has been undertaken, events organised, articles written, experiences recorded.

Whether in the Newsletter, Facebook Group, on the telephone or indeed while knitting for the Crafty Silver Dreamers, sharing mutual experiences has helped to reduce the isolation that some people have felt at times. It has also given many members the information to deal more confidently with issues that can arise when living with spina bifida and/or hydrocephalus.

The volunteers who have led on activities during this time have brought a wealth of experience, talent and skills that have benefited others. Their energy

and enthusiasm has been key to all that has been achieved and we couldn’t have done it without them!

Continuing to focus on the issues facing people as they get older is a priority for Shine. Building on what has been learnt from Silver Dreams we would like to welcome our members in the 40 plus age group. We know that it is around this age that members can start to feel the effects of ageing. Sharing knowledge about how to manage these effects as well as possible can make all the difference to health and well being. So keep the connections coming in 2014!!

Keep connecting…. 2014 and beyond! by Angie Coster, Project Coordinator Silver Dreams