Friday 31 July 2015

My experience of pregnancy- Karen Pritchard

I was diagnosed with Hereditary Sensory Motor Neuropathy as a teenager. In 1999, after further tests my diagnosis changed and I was then diagnosed with Distal Spinal Muscular Atrophy (SMA). In 2007 I gave birth to a baby boy.

I had a normal healthy pregnancy and the Consultant did not detect any abnormalities whilst I was pregnant. I was using my wheelchair at the time. I had a planned caesarean section at 39 weeks and was safely  delivered a baby boy. As you can imagine I was relieved when the heel prick test at birth (for MD) came back all clear.

I must admit I didn’t really think about passing on my condition and Evan showed no signs or symptoms. I was told to “go and live your life”. I do sometimes worry though if things might manifest  themselves as he becomes a teenager.

When I was pregnant I concentrated on getting through the pregnancy and did not really have any plans in place for afterwards. I didn’t really think my disability would affect me that much. I came down to earth with a bang. It was hard both physically and emotionally. I had a new baby to look after, was recovering from the birth and was also trying to cope with on-going pain from my condition. I suffered with postnatal depression and found it very debilitating. I found it really hard just coping day to day and looking back, feel there were times when I didn’t really live life but just existed. It got to the point that I had to spend some time in hospital. My husband Alan was a constant source of support.

Thankfully I had a good midwife and was referred to “Home Start”. I found this service so helpful and the person that I was allocated was fantastic. She helped me with all the practical things and as Evan got older she was such a valuable support for me. We had a good relationship and even though I no longer receive this service the lady and I still meet up as friends regularly. I sought much support from NMC and this was invaluable and got me through some really tough times. I was in touch with other women who had suffered postnatal depression, and it was great to be able to seek support from people who really understood. I also gained knowledge and advice through groups including PANDAS *and NETMUMS * which I found really helpful.

The pregnancy did take its toll on my body and as a result my body has become weaker. However, having a child was the best thing my husband and I ever did. Evan inspires me and when I am having a bad day and in pain he spurs me on! He is a grounded person. Kids get it and understand your circumstances.

My advice to others thinking about a possible pregnancy would be to try and plan ahead and think about the support you might need once the baby is born. Do not be afraid to ask for help and support. It is far better to do that, than feel lonely and isolated. Do remember that your mental health is important too!

Grab the opportunity to enter the world of motherhood with both hands – Dawn Wilbur During my life I have always had the attitude that dreams can become reality - barriers can be broken. I’ve had 2 babies. A stillborn baby daughter called Sky in February 1995 and in 1992 an incredible baby boy, Graham, who is now 12 years old. He is my greatest ever joy on earth. Both babies were born prematurely due to a condition called pre-eclampsia This was not connected with my condition Spinal Muscular Atrophy (SMA). Sky was born naturally and Graham by caesarean section.
Fortunately, in the early stages of pregnancy, I was able to benefit from weekly swimming sessions and regular physiotherapy sessions.

During my pregnancy with Graham, I had an amazing obstetrician who supported my husband and I throughout the pregnancy. Although my lung capacity is almost half that of a lady unaffected, I had peace of mind as I had regular lung function appointments at North Staffs. The reason for having Graham there was precautionary in case my lungs became problematic. On 4th October everything went really smoothly. Graham was born at North Staffordshire Hospital and went straight into the Special Care Baby Unit (SCBU). A couple of days later he was transferred to Chester SCBU as this was nearer home. For the first two weeks we visited him daily, then we stayed at the hospital for a week, in a room with Graham. This was perfect as they taught us first aid, bathing and many new born baby parenting skills. Once Graham had gained adequate weight we were able to bring him home. That was just a wonderful moment. The midwives from SCBU visited us regularly and then subsequently the health visitors.

I became a member of a national postnatal group and a local mother and toddler group. I mainly sourced information from other parents and I also joined some pertinent websites.
Pregnancy with a physical disability - www.apa.org

*Homestart – www.home-start.org.uk  - A nationwide organisation that offers help/ a companion to parents who have a disability.
*PANDAS – Pre and Post natal Depression Advice and Support www.pandasfoundation.org.uk

Next Steps
If you would like to speak to someone at NMC who has gone through a pregnancy, then please contact Sue Walker at NMC in the first instance. Tel. 01606 860911

Pregnancy, my experience – Louise Berry-Corbett

I am a physio client at NMC and was initially diagnosed wth Limb Girdle Muscular Dystrophy.
In 1999 I had my first child and a couple of years later I was diagnosed with my condition. What prompted the diagnosis was that one day when I was carrying my son in a baby carrier, I fell whilst out walking, and my son nearly hit his head on the kerb. It really scared me and I got quite frightened. I was obviously concerned about having another child but was told that the risk of having a child with limb girdle muscular dystrophy (MD) was very low indeed.

With a forthcoming pregnancy, I was advised to change some of the medication that I was talking for my md, as they could have a potential damaging effect on the baby. I had a normal pregnancy, but the pregnancy did put a lot of strain on my back.

The specialist was worried about me having a natural birth because it could really tire me out and put additional pressure on my back. However, a caesarean section would also take its toll on my body. It was a bit of a catch 22!

At 37 weeks I was induced, my waters broke and I had an epidural. The surgeon checked that it was okay for me to deliver the baby naturally. I had 2 midwives and the baby, a little girl, helped push herself out! There was also a specialist team on standby just in case.

Afterwards, I could not really get up and down and holding her was quite difficult. Unfortunately it wasn’t possible for my partner to stay so he had to sleep in the car! I found that the staff did not really cater for “disabled” mums and the extra support that they might need. When I came home I had plenty of help from my partner and my family which made a big difference.

My baby, Lacey is now 3. She’s absolutely fine, although as you can imagine I watch her like a hawk! I have decided not to have any more children because I do not feel physically strong enough. My body has weakened and it would not be fair to consider another pregnancy.
My advice to others is
  • Do not be afraid to ask for help.
  • Ask the hospital how they will help support you and / or your partner.
  • During the pregnancy think about taking well-being pregnancy vitamins.
  • Remember it can take your body a lot longer to recover from pregnancy than someone who does not have muscular dystrophy.
I would still like to know what sub-type of muscular dystrophy I have. Earlier this year another muscle biopsy showed dystrophy in the muscles. I have now been referred for an MRI in Nottingham and if that doesn’t prove conclusive then it will be genetic testing. I would like to be able to pass this information on to my children.

Pregancy

Starting a family? Thinking about starting a family is a very exciting prospect but it can also be daunting. Any prospective parent worries about how they might cope, but these worries can be compounded when you have a disability.

Seek support The most important thing is to talk things through with your partner, and seek advice and support so that you can make an informed choice about a possible pregnancy. You might contact your doctor, specialist consultant or may decide to have genetic counselling. It is also a good idea to speak to others who have gone through a similar experience.

Remember that being an “independent” parent does not necessarily mean doing things on your own. Being “independent” could mean that you need someone else’s hands to do the practical things for you. You can instruct others as to how you would like things done, whether that’s a PA, a friend or a family member.

Here at NMC they are several clients who have gone on to have children despite their disability. Deciding to have children is a big decision, even more so when you have a disability, but with the right advice, support and equipment, in most cases it is possible. Tanni Grey Thompson and Alison Laper are examples of parents with a disability who have shown that it can be done!

Disability, Pregnancy & Parenthood (DPPI) A charity that promotes better awareness and support for disabled people during pregnancy and as parents. A free and confidential enquiry service.Tel 0800 018 4730 email: info@dppi.org.uk Web: http://www.dppi.org.uk/ about.php

Live Life – Marc Chapman

I have written this article to show that life with a disability isn’t all doom and gloom! I believe we are the same and can do the same as anyone. I’m proof of that and I have never let anything get in my way preventing me from doing something.

I used to go to Hebden Green School (next to the NMC). When I was doing my GCSE’s, I didn’t get the results that I wanted in Maths and English and ended up with a D in English and an E in Maths when I needed a C or above. I thought this would ruin my chances of getting to college.
However, whilst at school I started coming to the NMC and studied Graphic Design which I very much enjoyed. I achieved an NCFE Level 1.

Inspired by my success in Graphic Design I moved on to college and studied BTEC Level 3 in Moving Image (Film and TV), where I achieved a Distinction. I also continued with functional skills in Maths and English.

This just proves that if you don’t get the grades at school it isn’t always the end of the world. There’s nearly always a way round it and you can end up being successful.

During my time at college I still carried on coming to NMC for physiotherapy. It kept me fit and healthy and was a huge boost to my well-being.

Although my next step was to pursue a HNC course at college, the course did not run, due to being under-subscribed. So I took a gap year. I have kept myself busy. I approached Matthew at NMC who was able to offer me some work experience with the Design and Print team on Wednesdays. I have loved every minute of it and never looked back. The camaraderie is second to none.

I have regular physiotherapy and I have started doing a web design course in training which I have also really enjoyed.

Coming to the NMC is a big part of my life and it provides me with the opportunity to socialise with many like-minded people. If I have any problems with my ventilator or wheelchair, someone in the building will have a solution, which puts your mind ease. I have made some good friends along the way, so I would definitely recommend the NMC to anyone with muscular dystrophy!

University, work and independence - James Taubman

I am a 23 year old business graduate originally from North Wales. I have Duchenne Muscular Dystrophy which I was diagnosed with at birth. I have used a wheelchair ever since I was 12 years old.

University
In 2013 I graduated from Glyndwr University in Wrexham with a BA in Business Marketing (2:2). The assessment consisted of coursework, examinations, group work and presentations. Attending university was a really enjoyable 3 years both from a social point of view and an educational aspect. The facilities and services for disabled students were very good.

Work Experience and Training
The NMC has given me with vital work experience, which was the initial reason that I made contact. Fresh from graduating from University, the NMC have provided me with a platform to gain new skills, which have included learning database software, speaking at events, marketing tasks such as creating product packages, and I recently began a graphic design course in-house.

I work at NMC as a Database and Marketing Assistant, and my main role involves assisting in the management of all the NMC databases. Joining and being part of NMC has brought so many benefits.
My condition has a physical impact on my work ability in the following ways;
  • Difficulty in using standard desks
  • Using a keyboard to type is a  struggle  - Drinking and eating  - Using the toilet.
NMC services that help me include;
  • Height adjustable desks throughout the building  - Providing computers or laptops with on-screen keyboard devices 
  • Care assistance with eating,  drinking or anything physical  - Providing unique and specialist physiotherapy
  • Fully accessible toilets and rooms with hoists
  • Helpful support and advice  about the condition or just general matters
  • Work experience and training motivation.
Physiotherapy & Exercise Prior to attending NMC I had not received any physiotherapy since school. I now have physiotherapy once a week, which helped me physically and mentally. This treatment also allows me to access the specialist equipment including the exercise arm and leg pedals and tilt table beds to stand supported.

I find the Neuromuscular Centre a great and welcoming place to visit. It provides a sense of community with an enjoyable work environment that is professional and highly sociable at the same time.

Independent Living
I live in Chester City in my own apartment with 24 hour care. Many of the people that help care for me are friends that I have met, so we are a close knit team. Whilst at university I began my care package with a care agency. However, after a year we switched to direct payments which has proved easier, providing me with more choice over who cares for me.

Leisure / Driving
I did attempt to learn to drive and had several lessons with an instructor in an adapted vehicle. However I felt it just wasn’t for me. This hasn’t stopped me getting around as I have a Motability vehicle which my PA drives. I have travelled abroad around Europe, USA & Canada, the most memorable places being Amsterdam, Toronto and New York.

I enjoy nights out with friends, going to the cinema, music concerts, days out/walks and eating out. One of my big passions is football. I‘m an Everton fan and also a season ticket holder so I go to home games. I have also been to Wembley twice.

New Transition Team – Cheshire West and Chester

Cheshire West and Chester Council has set up a specialised team to assess the needs of young people with disabilities and arrange appropriate support for them and their families. These young people aged between 16 and 25 years old, may have physical and/or learning disabilities or sensory impairment. The team will ensure that each has their own plan, setting out the steps required for a smooth transition from children’s to adult’s care and support services. Comprising seven full time staff, the team will work closely with the Council’s social care services and Special Educational Needs teams to ensure that every disabled young person has opportunities for paid employment, the potential to live independently, good health, and develops the skills to form friendships, relationships and be part of his or her community.

Councillor Brenda Dowding, Executive Member for Adult Social Care and Health, commented: “The new service recognises the need to target support to those families who have disabled children growing up to adulthood. By concentrating on the needs and wishes of the young person, we aim to put together a personalised plan which nurtures potential, opens up a range of new opportunities and reduces stress for families at a critical part of a young person’s life. “

Councillor Mark Stocks, Executive Member for Education and Children, commended the development as, “Emphasising what can be done when key services work together, putting the wellbeing of the young person at the centre of planning for their changing and future needs, so that they get the very best possible start in life.”

For further information contact: Louise Hill, Senior Manager,
Disabled Children and Personal Budgets. Tel. 0151 337 6300
Keith Evans, Senior Manager,
Prevention and Wellbeing Tel. 01244 972990
Samantha Williams, Senior
Practice Lead/Practice
Manager Tel 01606 271939

Thiara Begum

In 2006, shortly after giving birth to my son, I was diagnosed with Pompe Disease, a rare progressive metabolic disease. This led to the break-up of my marriage and depression.

In 2006, I began using a wheelchair whilst outdoors. I was also using sticks and a walking frame.
Even before the diagnosis and particularly when I was pregnant, I was struggling to climb the stairs and get up from the floor. I think I knew that something wasn’t quite right. After my son Adil was born I found things very hard both physically and mentally. I suffered from post-natal depression. Eventually I found a childminder for Adil for a few hours which gave me a break.

Over the years I have tried my best to give my son the best childhood I could, but this was not easy. As time has gone on, my health has continued to deteriorate. I never thought of myself as “normal” and I had no self-confidence at all. Day after day I would continue to fear for my future, as I knew that I would continue to get weaker.

Furthermore, I felt that because my family had been so protective of me, I had never gone out of my “comfort zone”.

I have had muscle weakness in my legs for many years and although I struggled to stand up, at one time I was able to walk holding onto things. However, I was not given the opportunity to have a go in case I fell, and instead things were done for me. I feel that this had a real impact on my health and as a result I became weaker much quicker as I was not using certain muscles.

In my opinion, sometimes, parents although well-meaning, can actually be hindering and / or making things worse.

In 2011 I came to the NMC for an assessment and I now receive regular physiotherapy and hydrotherapy which really help alleviate some of the symptoms of my condition. By 2012 I started using a wheelchair indoors as well.

In 2014, I met a lady called Sue Barker, at a fun day in my local park. Sue runs her own business under the umbrella of a local company called “Forever Living” which specialises in Aloe Vera. I was attracted to her stall and went over for a chat.

After talking to her I decided to try the products. She visited me at home and after taking the products I felt amazing. I used to have to go to bed for 2/3 hours each day. Now I don’t need to and I feel more alert, alive and active. Having benefitted from the products myself, I decided I wanted to take the opportunity to help others too.

So, with the help and support of my new husband, I now have my own Forever business and I have achieved beyond my imagination.

Thanks to Sue, I have turned my life around. I am no longer confined to four walls. My confidence and skills are growing every day and instead of fearing my future, I am looking forward to it.
Just because you have a long term condition it doesn’t mean you can’t do something.

NMC has won the prestigious GSK IMPACT Award run by the highly respected King’s Fund.


NMC was selected after rigorous judging and a gruelling assessment process. Matthew Lanham, NMC’s Chief Executive said, “To win this Award is one of the most significant achievements in NMC’s 25 year history”.

The 10 winning charities including NMC, were selected from over 350 charities nominated from across the UK. All were considered to be leading charities working in the Health and Social Care field, and crucially, to be making a demonstrable important positive impact on people’s lives.
The award comes at an important time for NMC. This major national endorsement of our work adds huge credibility when we seek funding - particularly as we seek funding to expand the Centre. It also gives us a new strongly confident voice when representing NMC.  Matthew Lanham continued, “I strongly believe that this recognition and endorsement is the most valuable part of the IMPACT.

Award prize”

The prize also included;
  • £30,000 which is clearly  extremely welcome!
  • A professionally made film about NMC.
  • Over 500 Professionally taken  photographs of all aspects of our community in action
  • 3 days training for Gill Storey and Matthew Lanham at the King’s Fund in London which    was inspiring and highly in formative, with all expenses  paid.
  • Gill and Matthew joined a  national IMPACT Award  winners network of 100 leaders    of charities in the UK, who have previously won. NMC joins that small and elite  group.
The Awards night itself was quite an experience! Joining Matthew and Gill for the Celebration Event were Nigel Burgess (chairman of trustees), Dr Ros Quinlivan (Trustee), Dr Jonathan Griffiths (Chair of Vale Royal CCG), Baroness Celia Thomas of Winchester (who herself has MD, has spoken about NMC in Parliament), Ben (Operations and Finance Manager) and Lyndsey (Head of Fundraising). We were all extremely proud to see the NMC film for the very first time on the huge IMAX screen at the Science Museum. The audience of 350 included various dignitaries and funders. A great chance for us to showcase what we do to some extremely influential people from Department of Health, NHS and The National Lottery and many more!

We took the opportunity of having a big screen in the Meadow for the Lego Movie event to show the film and some of the great photos to as many of the NMC staff/user community as we could. We wanted to share a little of the Awards night spirit back here in Winsford!

Your Rights To Fly - What You Need To Know

The guide offers advice for air passengers: when arranging and preparing for a flight, when arriving at an airport and checking in when moving through an airport, when boarding a flight, whilst onboard and when leaving the plane, details on where to find further information and useful contacts. To download go to: http://www.equalityhumanrights. com/publication/your-rights-flywhat-you-need-know- step-stepguide-disabled-and-less-mobileair-passengers.

Your passport to a smooth journey If you are disabled or have difficulty moving around, you can receive free assistance when you fly to and from the UK and Europe, including on domestic flights. Under European law, this assistance is available to anyone with mobility requirements – for example because of their disability, age or a temporary injury.  This leaflet explains your rights and what to do to make sure you have the best chance of a smooth journey. You can find out more from a free step-by-step guide ‘Your Rights to Fly’, T. 0808 800 0082. Visit: http://www. equalityhumanrights.com/ search/site/your%20passport

Manchester airport guide to facilities for disabled people Manchester Airport has a new a guide for their facilities for disabled people, which can be accessed by visiting: http://www.manchester-airportguide.co.uk/disabled-facilities. html

Railcard

To see if you qualify for a railcard Visit: www.disabledpersonsrailcard.co.uk/what-is-adisabled-persons-railcard  Or write to: Disabled Persons Railcard, PO Box 6613, Arbroath DD11 9AN

Cinema Tickets

You can get a Cinema Exhibitors’ Association Card (CEA Card) for UK cinemas. This enables you to get a free ticket for anyone accompanying you to the cinema. To qualify for this card you will either have to be in receipt of disability living allowance or attendance allowance, or be a registered blind person. For more information please contact, T 023 9224 8545 visit www.ceacard.co.uk

The Grand Union Canal

The Queen Elizabeth’s Foundation for Disabled People (QEF) charity has recently made some major renovations to its wheelchair accessible canal boat the QEF Jubilee. It has been upgraded to further enhance its access for people with disabilities and people with very restricted mobility can drive this canal boat. There are ramps for getting on and off board and lifts into the main inside section.
Facilities include a medical bed, a fully accessible bathroom with a level shower, hoist tracking on the ceilings throughout and charging facilities for powered wheelchairs. The controls are adaptable and can be customised, so that either a wheel, joystick or buttons can be used. For more information Tel. 01372 841148 visit vasd.org.uk/holidays/canalboat-holidays/

Walks with Wheelchairs

walkswithwheelchairs.com is a dedicated website of wheelchair friendly routes in The Lake District.

Holidays - Hafon y Mor, Marton Mere, Blackpool

My family and I (and the dog) went for a three night break away in May at Haven holidays, Marton Mere. It was an accessible, 2 bedroom caravan. The kitchen had lowered worktops and the bathroom had a shower with a seat on the wall in addition to a mobile seat and grab rails. The caravan was ramped and all the internal doors were sliding doors. I booked it through the Bookings Line and explained about my needs to ensure that I had the caravan that would best suit us. We had a lovely break. www.haven.com T 0871 230 2760 For adapted and accessible caravans – Call 0800 072 9496 to speak to the special needs team.

Make cooking easy !

https://www.lakeland. co.uk/18908/Masha The best masher as recommended by an NMC Client. Lump free mash in 20 seconds! Tip. Make a good amount and freeze the leftovers.

Disability Directory of Disabled Information, aids and mobility services

www.ableize.com

New delegating payments guide

New research has found that the majority of people needing assistance to make payments due to illness, capability or mobility challenges, are putting themselves at risk of fraud by sharing their card and PIN. More than half of those surveyed were also not aware of each of the safer options to make payments, such as a prepaid card or opening up a second account. To help these consumers, a new Pay Your Way consumer advice guide from the Payments Council sets out payment
options to help people stay in control of their financial affairs, when making payments independently or visiting the bank or ATM is difficult. Visit http://www.payyourway. org.uk/faqs/guides/ managing-payments/ to download the “Pay Your Way” Guide

Power loss emergencies – get on the register!!! – recommended by an NMC client

SP Energy Networks keep a Priority Services Register so that they can contact their most vulnerable customers if they experience a power interruption.  People can be included on the register if they are dependent on medical equipment, chronically sick, disabled, or have some other special need that may require a special level of assistance. Register by calling 0845 273 4444 or email: customer.care@ sppowersystems.com

Make your chair or bed more comfortable

Furniture raisers make a chair or bed higher, which can make it more comfortable to use. The new Langham SureGrip raisers can be used with beds, sofas, chairs and tables, any furniture that doesn’t move. It doesn’t matter if it has castors, legs, a solid divan base or even modern block feet, the SureGrip raisers will hold it firmly in place, without damaging your furniture. The raisers feature a double grip to hold tightly on to furniture and a generous weight limit of 110 stone (700kg), including the chair or bed. The raiser can accommodate castors, legs up to (70mm 23/4 inch) and even block the included adhesive pad adaptors.  For more information call 01332 850 277 http://www. gordonellishealthcare. co.uk/index.php?main_ page=product_info&products

Discounts on anything from mobility aids to accessible holidays

DH Discounts is a new site bringing together a collection of discounts, vouchers and special deals on a wide variety of products and services that disabled people want and need. The site aims to empower disabled people, to shop around, compare products and get the best price. So whether you want to have your bathroom redesigned, or you’re hoping to jet off to an accessible holiday destination, DH Discounts can help you source the best deals that the internet and the high street has to offer. http://disabilityhorizons. com/2015/04/dh-discountsempowering-disabled-people- through-consumer-choice/

Wheelchair ramps and scooter ramps

Wheelchair ramps and ramping equipment can maintain access to the home and increase quality of life. Wheelchair ramps range from the lightweight and portable through to heavier ramps designed for heavy duty use. Ramps assist in providing elderly or disabled people with greater mobility and independence. Tel: 01273 719 889. Email: contact@essentialaids.com Web: http://www.essentialaids. com/contact

The scooter store

Scooter Store is designed especially for owners of mobility scooters and powered wheelchairs. Just press a button, drive in and plug in to the power system. No need to drag your vehicle through the house or mess about with heavy locks and covers. While it stands safely outside its batteries can be charging ready for your next trip. Contact: Scooter Store Ltd on 01279 453 565 www.scooterstoreltd.com

Access to Work.

The number of disabled people being helped by Access to Work is up by over 10% on last year, according to the DWP. The Department says that new figures show that nearly 10,000 new disabled people claimed support from the scheme last year, which provides financial help towards the extra costs faced by disabled people at work, such as support workers, specialist aids and equipment and travel to work support. For more information about Access to Work visit:  https://www.gov.uk/ access-to-work/overview

Neuro Therapy Centre

Last year The MS Centre in Saltney, changed its name to The Neuro Therapy Centre. The Centre provides practical support and therapies to manage the symptoms of MS and other neurological conditions and supports over 400 people. For more information contact: The Neuro Therapy Centre, Units C1 – C4, Brymau Estate 1, River Lane, Saltney, Chester. Tel: 01244 678619 Email: info@neurotherapycentre.org

Emergency contact disc, as an alternative to the Tax Disc

The Emergency Contact Disc contains next of kin contact details and medical alert information for the driver. In the event of a medical emergency or road traffic collision that renders the occupants unable to communicate, a first responder will be able to obtain vital information that is not otherwise accessible at the scene.  The disc can be cut out and placed into the now redundant, tax disc holder. The information sections fold inwards so it would not be viewed by passers-by. All information is optional and the blank discs can be used to add customised information. The Emergency Contact Disc can be used alongside existing medical alert products like bracelets and necklaces.

Download the Emergency Contact Disc at: http://www.westmercia. police.uk/news/news-articles/ police-launch-emergency- contact-disc-as-alternative-totax-disc.html

Wheelchair ramps and scooter ramps

Wheelchair ramps and ramping equipment can maintain access to the home and increase quality of life. Wheelchair ramps range from the lightweight and portable through to heavier ramps designed for heavy duty use. Ramps assist in providing elderly or disabled people with greater mobility and independence.

Tel: 01273 719 889.
Email: contact@essentialaids.com
Web: http://www.essentialaids.com/contact

The scooter store

Scooter Store is designed especially for owners of mobility scooters and powered wheelchairs. Just press a button, drive in and plug in to the power system. No need to drag your vehicle through the house or mess about with heavy locks and covers. While it stands safely outside its batteries can be charging ready for your next trip. Contact: Scooter Store Ltd on 01279 453 565 www.scooterstoreltd.com

Access to Work.

The number of disabled people being helped by Access to Work is up by over 10% on last year, according to the DWP. The Department says that new figures show that nearly 10,000 new disabled people claimed support from the scheme last year, which provides financial help towards the extra costs faced by disabled people at work, such as support workers, specialist aids and equipment and travel to work support. For more information about Access to Work visit:  https://www.gov.uk/ access-to-work/overview

Neuro Therapy Centre

Last year The MS Centre in Saltney, changed its name to The Neuro Therapy Centre. The Centre provides practical support and therapies to manage the symptoms of MS and other neurological conditions and supports over 400 people. For more information contact: The Neuro Therapy Centre, Units C1 – C4, Brymau Estate 1, River Lane, Saltney, Chester. Tel: 01244 678619 Email: info@neurotherapycentre.org

The Care Act 2015

Seven years in the making, the new Care Act came in to place on the 1st April this year, with the intention of creating a clearer, fairer system of care, putting people in control of the way they are supported.

The Care Act means that local authorities now have increased responsibility for those who require care in their area. They have to carry out assessments for those who request them and provide a personalised budget. The focus of the new legislation is very much on the individual and making sure that disabled people have control over their lives and the support they get.

The main points of the new Care Act are:
  • Wellbeing. The main focus of the Act is the physical, mental and emotional wellbeing of those who need social care support, with personalisation and individual budgets at the centre.
  • Accessing information.  Local authorities now have a duty to provide an  information and advice  service to anyone applying for, or who already receives care.
  • The right to an assessment.  Disabled people and carers have the right to be assessed for support, whatever their personal or financial  circumstances. There’s a new set of  minimum criteria that  indicates when local authorities have to provide support. 
  • A personalised plan. If you qualify for care, local authorities legally have to provide you with a personalised care plan to achieve agreed outcomes, detailing the costs involved.
  • Payment. Authorities have to carry out a financial assessment to see whether or not you have to contribute towards the cost of your care.
  • Advocacy. People with communication or learning difficulties are now entitled to be represented by an independent advocate.
  • Tougher Criteria. Care providers will now be subject to tougher guidelines and the consequences will be stricter for those who aren’t meeting the mark.
  • More help for carers. Under the Act carers have increased rights. Also, an amendment to the Children and Families Act 2014 means that those looking after a disabled child under the age of 18 are now entitled to support too.
Cheshire and Warrington Carers Trust opens office in Chester Cheshire and Warrington Carers Trust (formerly Cheshire Carers Centre) have recently opened a new office in the new charity hub in Chester City Centre. Based in The Bluecoat School on Upper Northgate Street, they now have a team of 6 working in their newly refurbished offices. The new offices will enable carers to drop in for information, advice and support, and make appointments for benefits advice or Personal Budgets.

The office can be reached on 01244 400502 or via email westcheshire@ cheshirecarerscentre.org.uk
For advice in Cheshire East contact The Care Act Helpline T 01260 288 353 www.adviceCE.org.uk 9am – 5pm Monday to Friday

To find out how the Care Act will affect your care package contact your local authority.


Carers Trust launches guide to buying care

Carers Trust have launched a series of guides to help carers, families and people with care needs to know what to look out for when buying care. Finding the right care package can be a minefield. This guide helps people to understand what they should look out for when buying care and points people to where they can find quality assured care services from across the network.

Call 0800 085 0307. The Helpline is open Monday to Friday 10.00am - 4.00pm.
Email: advice@cheshirecarerscentre. org.uk
or visit: www.carers.org/cheshire

Flintshire disability Forum (FDF)

Offers:
  • Wheelchair and walker hire
  • Information and Advice
  • Outreach Information Service
  • Volunteering Opportunities in a supportive environment
  • Social group activities and outings.
Opening hours: Monday–Thursday 10am–1pm, Friday 9.30am–12.30
Old Town Hall, Earl Road, Mold, CH7 1AB
Tel. 01352 755546 E.mail admin@flintshirehiredisability.org

Gardening

Gardening is a lovely hobby and pastime. It gets you outdoors and gives you that all important vitamin D boost, something that people with neuromuscular conditions are often lacking in. Also, there’s nothing quite like seeing the fruits of your labour!

When you have a disability, it can be more difficult to enjoy pottering in the garden. However, in most instances with some adaptations it can be done. Whether it’s the equipment that you use or the way in which your garden is set up, there are ways around it. And with some help from a PA, friend or family member you are ready to go!

Sometimes standard tools can be adapted and sometimes it might be better to buy something more specialised. When you have a disability it’s important to try and reduce the effort involved, as you don’t want to tire yourself out and overdo it. If more specialist tools can reduce the effort on your part then it is worth paying that bit more.

Equipment and Tools
  • Make sure you use the right   tools for the job and try and   choose lightweight tools.
  • Think of how you might carry   your tools, in your wheelchair,   scooter etc.
  • Choose tools with longer  handles to avoid  over-reaching.
  • Think of the grip. Some grips   are made from soft materials and some have extra wide   handles.
  • Adapt your tools. You can make standard tools easier to   use by putting some plumber’s insulating tubing   over the handle.
Find a way that works for you. You may have to break down tasks into small achievable steps. Yes it might take you longer but does it matter. You will achieve an end result. Garden Layout Whether your garden is small or large, it can be enjoyed. You may have moved into a new property and therefore have a blank canvas. For most though, we inherit our gardens but with a bit of thought and ingenuity adaptations can be made so that we can all enjoy our garden. Think of the layout and accommodating as many senses as possible. Consider real grass, artificial grass, paving slabs, raised beds, pots and planters, plants and shrubs, a water feature, bird boxes/bird table. Some things are more costly than others. You can reduce the chances of weeds growing in your garden by covering the soil with a weed suppressing membrane and/ or a thick layer of mulch. Do remember to keep paths clear whether you are ambulant or in a wheelchair or scooter. Raised flower beds Containers or large areas that bring the planting area off the ground, making it easier to reach the soil for planting, weeding and watering. This is ideal if you have a disability particularly if you garden from a wheelchair or scooter. Garden Furniture and Seating This is another important consideration. You might stay in your wheelchair or scooter or you might transfer to a garden chair or bench. Adapted picnic benches are available and here at NMC and we have our very own one built by the NMC Shed Club! Enjoy the garden! The key is to accept that some things might be difficult or not practical for you to do. You may not be able to stand up and dig a vegetable patch but there plenty of other things that you can do. Ask for help. Share the enjoyment with your PA, family member or friend. For example you could choose the plants and explain where you would like them planted and your PA could help put them in. You will have much enjoyment watching them grow and feel a sense of achievement.

Simply “Being” If you simply enjoy just sitting and relaxing in the garden, think of all your senses, smell, sound and sight. Think about having a bird feeder and maybe a small water feature – there’s nothing more relaxing than the sound of water. Enjoy the perfume and colour of the flowers and plants. You can enjoy your garden all year round, just wrap up warm.

The Mobile Garden
This originally started as a creative, versatile solution to the problem of any gardener, who has become less able through age or infirmity, to enjoy their favoured pastime. It is suitable for use all year round, indoors or outdoors.  The Mobile Garden workstation is constructed in polypropylene; a durable, light weight and non- perishable material which requires no maintenance; the main, circular, planting tray of The Mobile Garden is 1.2 meters in diameter and 15cm deep with drainage holes in the base and a central divider. tel 0773 398 3768 or visit: www.mobilegarden.co.uk  

Gardening for Disabled Trust
Don’t let disability, age or accident stop you. We can help by: - Adapting private  gardens to meet the special    needs of the disabled  gardener - Making grants towards tools,    paving, raised beds,  wheelchair access and    greenhouses for disabled  gardeners.  - Providing a forum for  disabled gardeners by  publishing the Garden Club’s magazine. www.gardeningfordisabledtrust.org.uk 

Thrive
Thrive is a national charity that helps people with a disability to start or continue gardening. The website contains lots of information on how to make gardening jobs easier and details of equipment and tools that might help you. www.thrive.org.uk

Carry on Gardening
Lots of advice and tips for disabled gardeners, whether you are gardening from a wheelchair, have a weak grip, are one-handed, can’t bend down very easily, are partially sighted, have had a stroke…. www.carryongardening.org.uk

Peta (UK) Limited
They design, manufacture and supply ergonomic tools, aids and assistance devices for disabled people including garden tools. www.peta-uk.com

Royal Horticultural Society
Sharing the best in gardening - www.rhs.org.uk

Beware of dental charges when in receipt of ESA - Karen Pritchard

I am sharing my recent experience of dental care whilst in receipt of ESA, to make you aware of what happened to me so I can prevent this happening to others in our community. On my last routine dental check I was asked by the receptionist if I was in receipt of ESA to claim free dental care. I explained that I was and I signed the relevant form.

I thought nothing more of this, until a few weeks later when I received a letter from the NHS Business Services Authority, with a penalty notice charge of £65 and a further £13 for my unpaid NHS dental treatment! As you imagine I was completely shocked.

I approached the dental Practice Manager and she declined to accept any responsibility over the matter. She informed me that to claim free dental care I needed to be on Income based ESA and not Contribution based ESA. At this point it was too late as I had a bill waiting to be paid. I even provided the dental receptionist with proof of my ESA, as requested, and asked her to take a copy, but she said she didn’t need to.

Had I thought for one minute that I was not entitled to free dental care then of course I would not have signed the form. I was simply asked if I was on ESA and when I replied that I was, I was asked to sign the form.

With the threat of a County Court Judgment or legal action, I paid my bill. Luckily, after continually fighting my case and also explaining my health issues to the board I finally had my money returned.
Please be aware the next time you sign a form with your dentist ask all the relevant questions and take all the time you need to read the form. Don’t feel rushed like I did. The Practice Manager did inform me that her staff needed training regarding this issue, so hopefully the fact that I have highlighted this problem to them, will prevent this happening to another patient at my practice.