First Tuesday Catch Up – Sheffield

First Tuesday Catch Up – Sheffield

Event Date/Time: September 1st, 2015 1:00PM – 3:00PM

Location: Ponds Forge International Leisure Centre, Sheaf St, Sheffield, S1 2BP

Sheffield Meet Up

A chance to make new new friends and share your experiences with others. There’ll also be a chance to meet our Support and Development Worker Geraldine Whittle and Sophie from SASBAH for coffee and a chat.

All welcome!

  • Event: Joint Event
  • Event Type: Social
  • Event Cost: Free

For more information or to confirm your attendance please contact Geraldine Whittle by E: geraldine.whittle@shinecharity.org.uk or T: 01733 555988

Ponds Forge International Leisure Centre

Swap Shine news ………. in #Solihull

Swap Shine news ………. in #Solihull

The Shirley Centre

Event Date/Time: September 2, 2015 12:00PM – 3:00PM
Location: The Shirley Centre, 274 Stratford Road, Shirley, Solihull B90 3AD

This is a great opportunity for Shine members in Solihull to catch up with our Support and Development Worker Elaine Adams, to hear about the latest developments at Shine, and swap news and views with each other!

For more information, please contact Elaine Adams via E: elaine.adams@shinecharity.org.uk or T: 02476 683120

The idea for the Health Suite arose after our 2011 survey

The idea for the Health Suite arose after our 2011 survey

Health Suite

On April 21st Shine’s new Health Suite was officially opened in Peterborough, where we shall be holding regular clinics. So we are now ready to start taking referrals.

The idea for the Health Suite arose after our 2011 survey showed that lots of members are not getting regular health checks, and have few opportunities to speak to professionals who understand their conditions.

A visit to the clinic will give you a chance to talk to three Shine staff members who are familiar with the health challenges faced by many of you: Gill Yaz will address various aspects of physical health and conduct health checks, Robin Barnatt will look at mental wellbeing issues, and Kathy Allen will consider factors such as coping with daily living, difficulties with cognition and memory, and help that might be available for you.

If concerns come up, we can discuss these in a little more detail, and think about ways of dealing with things that arise, such as looking at activity planning or goal-setting. If it seems that you could benefit from further help, we would be able to support you in contacting your GP, health professionals, or relevant organisations.

The Health Team will also be present at various Shine events, including regional support groups to promote awareness of the conditions and their effects, and we regularly hold sessions as part of national events, such as the Shine40Plus conference and Family Opportunities Weekends. Further ‘Great Minds: Promoting Mental Wellbeing’ events are planned, which give members the chance to meet one another and share experiences, as well as learning more about mental health and coping techniques.

To refer yourself to the Clinic, please contact Shine on 01733 555988.

If you would like more details about the Clinic or the Health Team, please contact us:

  • Gill Yaz, Health Development Manager: E: gill.yaz@shinecharity.org.uk
  • Robin Barnatt, Health Development Officer: E: robin.barnatt@shinecharity.org.uk
  • Kathy Allen, Occupational Therapist: E: kathy.allen@shinecharity.org.uk

Claire Houseman: How direct payments have made a difference

Claire Houseman: How direct payments have made a difference

Claire Houseman,

Shine member, Claire Houseman, tells us how direct payments have made a difference to her life.

I feel very strongly about telling my story so that other Shine members, who need help with daily living, know about direct payments and where to go for further information.

I lived on a farm with my parents and sister.

In 2001 I moved away from home to Cumbria University to study tourism. I sourced a good care agency that assisted me with personal care – I had a brilliant time living the student life and achieving a Higher National Diploma (HND).

Returning home in 2003, I realised that no help was available for me, except from my parents. I contacted my care manager who introduced me and my family to direct payments.

My care manager assessed me as to what I could and couldn’t do. I was then allocated about 15 hours a week of funding which I could use to pay for some of my care. These hours have increased over the years following re-assessments and changes in my circumstances. I currently have 37.5 hours worth of funding.

One of my first steps was deciding who I would employ to help with my care.

The options were to use an agency or to employ someone myself. I opted to employ someone from the local area, as this let me choose who I wanted.

The only snag to this option is that all of a sudden I became an employer. I had to think about tax, national insurance, sickness and holiday pay, and liability insurance.

Luckily, I found that there are organisations that are set up to help with all of this. I use the Independent Living Scheme who have been brilliant all the way. Without their help I would not have been able to complete the wages and legal information.

I now live on my own in a ground floor flat in York. With the combination of four carers and an agency I live a very full and active life. I work two days a week as a visitor receptionist at a museum taking money for admissions – my carers take me in my adapted car, stay with me and then bring me home again.

They help me access the gym and go swimming at least twice a week! They help with the everyday things such as personal care, shopping, housework and cooking but the one thing that is very important to me is they enable me to meet up and go out with my friends.

I am Honorary Secretary for North and West Yorkshire ASBAH, attend committee meetings, and help with the
activities that members take part in.

Living with spina bifida, hydrocephalus, and epilepsy could so easily stop me from living an independent life, but I have been lucky to have been able to use direct payments – they changed my life!

Claire Houseman

100 mile swim and 100 mile wheelchair race, using only his arms!

100 mile swim and 100 mile wheelchair race, using only his arms!

Gareth Picken

Gareth Picken has spina bifida and hydrocephalus, and is a keen sportsman. This year, 15 year-old Gareth from Cheltenham took on the amazing challenge of completing 100 miles swimming and 100 miles wheelchair racing in aid of Shine.

Gareth uses only his arms for these sports. Over six months, Gareth has used every training session and competition to rack up the incredible distance, and completed his final three miles of wheelchair racing at the London Mini Marathon on 26th April. He has raised £790!

Wheelchair racing is a relatively new sport for Gareth, who got his first racing chair in June 2014.

He trained hard and soon reached the England Nationals – covering 100m in 20 seconds. Micky Bushell, paralympic silver medallist, holds the record at 14.69 seconds.

Now Gareth is focusing on wheelchair racing and seated throwing. Mum Nici recalls how, even though he was number one in his category (S7) for swimming in 2014, “he would be placed with the 10 year olds at the local swimming club, because he can’t keep up with the non disabled adults.”

Gareth first became a member of Shine, after attending a Shine short break in 2013.

“It was great fun – and a relief not to have to keep explaining my disability.”

Now Gareth wants to encourage other young people with disability to try new sports and overcome barriers. After finishing his GCSEs he plans to go to college to study for a BTEC Diploma in Sports Science. His advice for budding young Shine sports people?

“Don’t think you can’t do things – you can, but differently. If you want to do something just do it – don’t let your disability stop you.”

To support Gareth, go to his Justgiving page: www.justgiving.com/Gareth-Picken

£35,000 to fund a Development Coordinator for the Shine40Plus!

£35,000 to fund a Development Coordinator for the Shine40Plus!
Shine40Plus is an opportunity for people aged 40 years and over to share their experiences, make connections, and celebrate their achievements.
Shine40Plus is an opportunity for people aged 40 years and over to share their experiences, make connections, and celebrate their achievements.

The Freemasons Grand Charity has made a £35,000 donation to fund the salary of a Development Coordinator for the Shine40Plus network.

Since the Freemasons Grand Charity began operating in 1981 it has been a keen supporter of Shine.

Shine40Plus allows people over 40 to share their experiences; providing daily social interaction, comfort, and information about managing their condition and looking after themselves.

Previously there has been little attention given to the issues faced by people with spina bifida and hydrocephalus as they get older.
Previously there has been little attention given to the issues faced by people with spina bifida and hydrocephalus as they get older.

This is the first group of people experiencing spina bifida and hydrocephalus to reach their later years and the creation of this network will enable them to share their knowledge and experience with one another, helping to alleviate feelings of isolation and anxiety.

Laura Chapman, Chief Executive of the Grand Charity, commented, “It is wonderful to be able to help bring people together, ensuring they receive the guidance and support they need to move into the next stage of their lives with happiness and a sense of belonging. Helping vulnerable people in our community is central to Freemasonry and we wish this project every success.”

Visit: www.grandcharity.org

Now, Shine40Plus is a chance to have a voice for change, as well as develop peer support through networking and identification with other members.
Now, Shine40Plus is a chance to have a voice for change, as well as develop peer support through networking and identification with other members.

“How do I make it accessible and interesting to everyone?” – Shine’s Heritage exhibition

“How do I make it accessible and interesting to everyone?” –  Shine’s Heritage exhibition

Marc Lupson

Marc Lupson, Heritage Project Development Officer, explains why this event is so important and the care being taken to prepare for it.

Since joining the Shine family as Heritage Project Development Officer back in February, my journey has been one of learning, appreciation, respect, and enjoyment in getting to know all of you out there!

Coming from a background of environmental and social grants management, as well as being an academic trained in heritage, my knowledge and awareness of spina bifida and hydrocephalus was limited to say the least.

So, being asked to design and deliver a permanent exhibition about the heritage of spina bifida and hydrocephalus is a big challenge.

Heritage exhibition

Where do I start?

How do I choose what to put in it? How do I make it accessible and interesting to everyone? These were just some of the many questions that I asked myself on my first day!

What’s it all about?

The original idea was a smaller exhibition on the history of ASBAH/Shine to celebrate its 50th anniversary in 2016. However, there is a huge amount of wider history attached to spina bifida and hydrocephalus that can’t be ignored.

This discovery has paved the way for a successful £60,000 bid to the Heritage Lottery Fund to bring this wider history to life.

The history and contribution of ASBAH/Shine will be recognised as part of the exhibition, but to have it as the primary focus would not tell the full story, a story that needs to be shared and for people to learn about.

Why do it?

Having spoken to many people since I joined Shine, the question “Why are we doing this?” has been asked from time to time.

Doing an exhibition could be seen as ‘something nice to do’, but with no real significant benefits. So why do it?

I truly believe that it is a fantastic opportunity to do something unique which will greatly increase the exposure and awareness of spina bifida and hydrocephalus to the wider community, both in and outside the UK.

It is a heritage that has such depth but has never been looked at, and it is an opportunity to give the spina bifida and hydrocephalus community a voice.

On a personal level, I have learnt so much already and I have barely scratched the surface!

What’s going in it?

I am hoping to make the exhibition an informative and interesting experience for everyone, as it will be open for anyone to visit its permanent display at Shine’s Head Office in Peterborough. Some sections
will also be mobile and taken around the UK.

I am very conscious that it needs to be fully accessible to cater for many different audiences and I really want people to engage with it. I promise it will not be ‘medically focused’ and there will be things
to see, watch, listen, and to touch!

Once the exhibition is up, that’s not the end of it. History and heritage are constantly being written, so there will be additions in the future to ensure nothing is forgotten.

Heritage exhibition