Category Archives: Blog

SDN’s is seeking members to contribute to the blog. If you have a burning issue or you want to share something with other members please contact us.

Wheel’s Wonderings contributor is written Ian Pugh a disabled teenager living In Shrewsbury.

lynda jones

BAGGINS BLOG CHILDRENS SERVICES- PAST AND PRESENT

A teenage mother was detained in a psychiatric hospital during her pregnancy, given high levels of medication plus ECT during this period; So that the developing brain of the baby has 220 volts running through it. That was 1949, that baby was me. Of course in 2014 that doesn’t happen does it? Well, actually in some cases it still does!

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I spent 5 months with my birth mother at Chaddeslode House which in those days was a home for unmarried mothers. Then a merry-go-round of various placements until finally at 4 yrs old I was adopted, sadly already with embedded anxiety and emotional issues. My adoption was a bit of a disaster and my childhood and adolescence was a very difficult time. 

However what I did have right from toddler hood through to adolescence was the continual support and care of just one exceptional Welfare Officer/Social Worker. She made every child in her care feel special always there for them, going the extra mile even out-of-hours. She guided me through those turbulent times pointing me in the right direction. She saw my potential and used her skills to keep me from going into care again. 

That was the 1950s/60s So now of course that level of care and continuity within Children’s Services is the norm isn’t it? Sadly it isn’t the norm. So was I more fortunate during the 1950s/60s then our Children with emotional issues are today? 

I would really appreciate your comments about this particular blog and if you think Children’s Services have made progress in the last sixty years or is there more that could be done to help vulnerable children? 

Lynda Jones-Official Blogger Shropshire Disability Network on Mental Health Issues

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How does TRM (Targeted Muscle Innervation) Work?

With TRM a prosthetic limb is controlled solely by a User’s thought process! The user imagines moving the prosthetic limb and it responds accordingly. To enable this to happen surgery is performed to redirect the nerves that used to control the limb to a new muscle group. Amazingly by connecting existing functioning nerves that controlled a persons limb to a new group of muscles so these muscles can read signals. 

In order for the prosthesis to work, the user has to imagine moving their missing limb. Nerves send these thought signals from the brain to the new target muscle & the result is the muscle contracts. Electrodes that are carefully placed against the skin recognise the signals & with the use of a small computer, it translates them into the desired movement. This results in the user being able to control the prosthesis, even allowing control more than one joint at a time. Ie rotating a hand & gripping with it or bending an elbow & wrist. How amazing technology is becoming but it does not come without hard work by the amputee, expert knowledge of surgeons and a host of other people that work in different areas of the medical profession.

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Controlling a Prosthesis by thought alone. Impossible? Not at all!

SDN likes to bring you up to date information on may areas of disability, & indeed just one example was in the March 2014 edition of “Your Voice” which included an article from Access On-line magazine. This particular article reported that a team of Swiss & Italian scientists had enabled Danish amputee Dennis Aabo Sørensen to test a wired prosthetic hand enabling him to sense touch. This had been the result of 5 hour operation when electrodes were grafted onto the ulna & median nerves in Dennis’s upper arm. The results were amazing as the outcome was better than expected when he experienced accurate touch in his finger tips but despite this as it was only an experiment Dennis soon had to revert back to his prosthetic limb. 

I was reading a Blesma magazine & discovered amazing things are happening closer to home as technology in the UK has now enabled Corporal Andy Garthwaite to be the first person in the UK to control his prosthesis by thought alone! In September 2010 Andy was wounded in Afghanistan by a rocket propelled grenade, robbing him completely of his right arm. As with anyone loosing a limb there is rehabilitation programme that takes place in the hope of getting back as much as possible of what has been taken from you. Initially he was given a traditional prosthetic arm, as any one would find, this is no substitute for what you have lost, plus having live with the many frustrations that someone in this situation must experience. 

Thanks to a process called Targeted Muscle Reinnervation (TMR) & a very clever surgeon from Austria called Professor Aszmann, during a 6 hour operation on Corporal Garthwaite redirected intact nerves into muscles on his chest wall. By placing electrodes on those muscles they become natural amplifiers which then work the prosthesis. Corporal Garthwaite lost his arm from the shoulder so that is why muscles on his chest wall were used. Now when he thinks about using his prosthetic arm it is the thoughts in his mind that triggers the chest muscles to that movement ie to lift, extend. Since Andy’s operation in December 2013, everyday tasks that many people just take as the granted ie turning pages in a book, stirring a cup of tea, making drinks, opening a bottle, unscrewing a jar have become easier for Him. So often people with prosthesis, due to many frustrations in lack of function don’t wear them but with TMR the limb is closer than ever to being like the one you have lost making life easier. 

Like Captain Nic Beighton who spoke at our SDN meeting last December, it takes a lot of rehab & determination by the person who has lost limb(s) to work hard, practice & more practice in order to achieve new goals. Of course for this patients also need the support of not only surgeons & nurses but specialist physiotherapists & occupational therapists. As we know, even with technology nothing will be exactly like the limb you have lost but it is good to see how modern technology is moving forward & hopefully continue to move forward. 

Andy received treatment at several places & like Nick had a lot of his treatment at Headley Court & both are thankful to the MOD & support Blesma as well as many others for the help & support given to them. SDN followed the team which included Nick Beighton-(double amputee & Paralympian London 2012) taking part earlier this year in Beeline Britain (First ever Land’s End to John O’Groats in a straight line)

and you can read (and support) more about this epic challenge by visiting http://beelinebritain.com 

Next time: How Targeted Muscle Reinnervation works.

Signal

Signal’s summer news from Shropshire & Africa

The sun is streaming in through the window as I write to you today, and the sun has certainly been shining on Signal’s projects to help break down the barriers to independence – in social, economic and political life – for people who are deaf or who have hearing impairments. 

In the attached Summer Issue of Wave, Signal’s Chairman Rod Clark announces a momentous development in Shropshire, and our International Programmes Manager Karen Goodman-Jones gives a personal account of the work which is giving deaf children and young people in Uganda and Tanzania a better and a fairer start in life.  Our partners in Zambia are also the subject of The Wave Interview

With all this sunny news, we must not forget that there is much more to do and much hard work to come, as evidenced by requests to our partners in Uganda to expand the programme there, so that deaf children in neighbouring areas can enjoy the same “fairer start.”  There is a suggestion at the end of Wave, too, of how you may be able to help the industrious deaf students in Tanzania on their path towards an independent future. 

Please do share Wave with people you know, particularly if they live in Shropshire, so that ever more people can benefit from our ongoing local initiatives, such as the Sign Language classes.  We will update you on our busy programme in Malawi in the Autumn Issue, but do also keep an eye on our website, if you can, to keep in touch with Signal’s news in the UK and Africa in between times: http://www.signal.org.uk/category/news/

Click the link for a PDF copy of the newsletter: Wave_Summer 2014

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Funding Residential or Nursing Care Fees

Funding care fees, fully or even partially, can be an expensive business. Understanding, therefore, what the state provides plus being clear about costs and affordability is essential. This article seeks to outline information which any self-funders should know. 

About the 12-week property disregard

Where, excluding your property, your capital is below the threshold – in England and Northern Ireland, £23,250; in Wales, £24,000; and in Scotland, £26,000 (2014/15) – and your income is insufficient to meet the care fees, the local authority can assist with the costs for the first 12 weeks of permanent care. Any financial help beyond that period, however, will be a loan against the value of your property and recovered from the eventual proceeds of its sale. 

About deferred payments agreements

If social services has assessed you as needing care and your capital is below the threshold, they can lend you the funds to pay for care, to be repaid from the proceeds of your property when it is ultimately sold. There is, however, a limit to the amount they will lend you. Plus it could also adversely affect your means-tested benefit entitlements. 

About Council Tax exemption

Should you move into care and leave your property unoccupied, you should be entitled to a full exemption from Council Tax until it’s sold. 

About Pension Credit and Severe Disability Addition

If you are entitled to Attendance Allowance, then subject to your savings and income, you may be entitled to claim Pension Credit with a Severe Disability Addition, but only where your property is on the market. If it is not on the market, it will almost certainly be treated as capital and affect your entitlement to this benefit. 

About Attendance Allowance

Attendance Allowance is a non-means-tested, non-taxable allowance paid at the lower rate of £54.45 per week to those needing care by day or night, and at a higher rate of £81.30 per week for those needing care both by day and night. 

About Registered Nursing Care Contributions

Irrespective of whether your stay in care is temporary or permanent, if the care home provides nursing care, the NHS makes a Registered Nursing Care Contribution. This currently amounts to weekly contributions of £110.89 in England, £120.55 in Wales, £100.00 in Northern Ireland and £75.00 (plus £166.00 for personal care) in Scotland and is paid directly to the care home. 

About the National Framework for NHS Continuing Healthcare

Where your needs are primarily healthcare-related, you may be entitled to full care fees funding from your local Primary Care Trust following an assessment under the National Framework for NHS Continuing Healthcare. You can request a review of eligibility at any time. 

About local authority funding if your money runs out

Once your capital reduces to the threshold, you can seek local authority assistance. If there is any possibility that you will not be able to meet the full cost of your care in the long term, arrange an assessment of your care needs to ensure they will step in to help with the funding when required. 

About financial products to meet care costs

It is perhaps surprising that there exists only one dedicated financial product that has been specifically designed to meet care costs: the immediate needs annuity. This can provide a regular increasing income for as long as you need care, which should cap the cost of care from the outset. It is important, however, to seek advice and not to try to do it alone, as such annuities do not suit all circumstances. 

Click the link to learn more:

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To receive a complimentary guide covering Wealth Management, Retirement Planning, Inheritance Tax Planning or Care Fees Planning, produced by St. James’s Place Wealth Management, contact Neil Lewis of Lewis Wealth Management Ltd on 01743 444700 or email Lewis Wealth Management at Lewiswealthmanagement@sjpp.co.uk.

Lewis Wealth Management Ltd represents only St. James’s Place Wealth Management plc (which is authorised and regulated by the Financial Conduct Authority) for the purpose of advising solely on the Group’s wealth management products and services, more details of which are set out on the Group’s website www.sjp.co.uk/products. The title ‘Partner Practice’ is the marketing term used to describe St. James’s Place representatives.

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Baggins Blog – All Things Mental Health

400 Years of Petitioning; Advocating; Campaigning For Better MentalHealth Services 

Lynda Jones

Did you know that as early as 1620 Patients in psychiatric hospitals were coming together to speak out with the petition of ‘ the Poor Distracted Folk of Bedlam.’ In 1845 the ‘Alleged Lunatics’ Friend Society’ was set up by John Perceval his aims were- Quote: “Protection of the British from unjust confinement on the grounds of Mental Disorder and the redress of Persons so confined.”John was himself a MH Service-user having witnessed the assassination of his Prime Minister father Robert Perceval when he was just 9 years old. John was the forerunner to MH Advocacy. 

Now let’s fast forward to 1960′s The brave new world of Civil Rights Movement, lots of social changes came about empowering people towards collective and individual Civil Rights. Now we move to 1970s the time that alliances were beginning to be made between patients and professionals giving MH Service -users a greater say in improving conditions on Wards. Charities such as MIND and National Schizophrenia Fellowship (now RETHINK) were formed. So moving on to 1980s Which saw formations of local Service-user Forums such as Nottingham Advocacy Group- NAG- aptly named because that is what we did! 

So the question I would like to ask you all is: 

After 400 years of hard work Campaigning; Advocating; Petitioning.

What have achieved towards this in the present day of 2014? 

A Mental health blog written for SDN by Lynda Jones

The Sun Has Got His Hat On!

The sun has finally arrived and what better time to get outside and try something new. From an amble around the Quarry to trying a new activity such as cycling there’s lots going on but often we just don’t know how to get started. 

If you currently do little or no physical activity or sport and who want to get fit and healthier then look no further.  Loughborough University have produced a series of guides to help.

Terri Graham, a research assistant in the Peter Harrison Centre for Disability Sport (PHC) at Loughborough University who compiled the resource, said:

“The aim of the guides is to improve peoples’ understanding of what they can do to improve their health and fitness as a disabled person.

“All of the disability-specific information they may normally have to spend hours searching for is now all in one place. It allows the reader to progress at their own pace through the guide, or they can simply dip into topics that are relevant to them.”

The guides are available in print format and are downloadable online at www.lboro.ac.uk/phc-toolkit Hard copies are also available so please give me a ring if you would like me to send you one.

In my role as disability lead at the County Sports Partnership I feel very lucky to work with some incredibly passionate people around the county who are striving to make sure sporting opportunities are available for all. So committed are these individuals that we now meet quarterly to share ideas and opportunities.  Even better than this is that we take it in turns to host the meetings which gives us an opportunity to see different parts of the county and the great work that is taking place within our community.  Our last meeting was held at Albrighton Trust.  Featured previously on the SDN website this is a MUST SEE.  Offering educational and recreational activities for disabled and SEN children and young people I couldn’t think of a better place to spend a morning discussing disability sport.  Through hardwork and determination Sandie and her small team have created a wonderfully inclusive setting.  This I’m happy to say is just one of many excellent facilities that Shropshire has to offer. 

And finally, hopefully you’ve already read about the SDN Gold Challenge.  I met with Ruby a number of weeks ago and she was bubbling with excitement about the challenge.  Sometimes we all need that little bit of extra motivation to get us going, whether its walking to the shops rather than taking the car or doing that thai chi class that we’ve always said we would do.  Last weekend as the sun was burning down on my shoulders as I struggled round the Shrewsbury half marathon I needed that little bit of extra motivation.  The crowds support was fantastic and the fact that I could get home and log 21kms as part of the SDN Gold Challengers  goal of achieving 2014km by the end of the year made it all the more worthwhile.  I encourage you to join the teams completing in the SDN Gold Challenge, every metre counts and together we can hopefully achieve our goal of raising £2014 for SDN. 

Helen Freedman

helen.freedman@energizestw.org.uk

01743 453497

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Raising Awareness of SDN at Telford PRH

Paula, Margaret & Ian do a sterling job at Princess Royal Hospital, Telford (PRH) raising awareness of SDN 

All of us on the Management Committee are pleased with the way our Outreach Officer for Telford, Ian Roberts is taking a lead on raising awareness of our work at the PRH. We had our second day there on Wednesday 3 June. 

Regrettably we were short of volunteers! Shropshire is a large county &it is our intention to raise awareness, raise funds and meet you where you are by having meetings etc across the county. Ideally SDN needs a group of volunteers in each area. At the moment we are building on this in Shrewsbury, Telford and Oswestry but it takes time and without your help, it can not be done so if you can help, , we would be grateful. Telford is no different to our awareness days at Morrisons Oswestry as we need at least 3 people volunteering for each hour. 

These days at PRH are very important to us. From early days at SDN we have had a saying  Well, we are working on it but still have a long way to go. So what do we do when we are at PRH? We talk to people if they want to talk with us, we share information by giving leaflets to those who want them, we meet many nice people & share many conversations and during that time we often use our signposting skills. The funding gained is an “add on” that we really appreciate. Few people complete membership forms on the day, but recent new memberships coming in via Telford people indicates they have come to us as a result of PRH awareness days. This shows SDN is needed there just the same as other places we go. 

So why are we taking this opportunity to increase our funds? Leaflets need to be replaced, printed newsletters need to be paid for but that is not all, we have insurance to pay, a website to maintain, a printer to run and more. Until now, we have had to take our information back and forth to Telford. Ian as Outreach Officer needs to keep a case with information “on hand” at Telford as He needs it for PRH regularly as well as other places/ ie ensuring membership forms, leaflets etc are put in public places in Telford. We can’t keep ferrying information to Telford and anyway they may be needed in both Shrewsbury and Telford. 

We are grateful to those who have helped at both our Telford days at PRH. Thank you to all. We need to ask you to support Ian your Outreach Officer at Telford.

 Thank you Ian, Margaret & Paula for all you are doing for Shropshire Disability Network in the Telford area, it is appreciated by all of us.

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My Journey to get an Assistance Dog

My name is Sam, and this is my blog about my journey to get an assistance dog. I am twenty-two, a keen video gamer and writer, I have a disability, and six pet rats. 

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The first thing people would say if I said this is either “Rats?!” (With a tone of voice ranging from eew – aww!). The second thing said would probably be a comment on my disability, ranging from “You don’t look disabled!”, “I would never have guessed!”, and, of course, the infamous awkwardness where people withdraw and treat me differently on learning of my disability status, to be fair, probably because they don’t know what to say. 

I have Asperger Syndrome, hand and feet deformities, and mental health conditions. I’m looking forward to the day when both pet rats and disability become a topic of conversation that isn’t controversial, and believe that will happen in my lifetime (For disability at least anyway! Although I hope it does for pet rats too!). 

But to get to that stage, better education on all types of disabilities needs to be provided to both abled and disabled people. 

I believe assistance dogs are a powerful tool not only for the people with disabilities they serve, but for abled people to some extent as well. As a disabled person, when I see an assistance dog out in public with its owner, be it a guide dog, a hearing dog, an autism assistance dog, I see hope. I see someone that’s receiving support that often councils are unable to give, family and friends could be unable to give (Not everyone has family or friends anyway), from an animal that has often been trained not only just for its owners condition, but for the specific owner. 

For an abled person, however, the dog represents something so much more. It represents the fact that disabled people have their own place in society, and are equals. It represents that yes, disabled people can struggle with some tasks, but given the right support they can flourish. And it represents a friendly (fluffy?) face that is a bridge to help make conversations just that little bit easier on both abled and disabled people. 

As a young adult with autism, I struggle with social interaction with people I don’t know. An assistance dog would act as a bridge for me – someone familiar to be my constant, so I can go out and use public transport such as trains and buses on my own, so I can ground my hands in its fur to soothe myself as I talk to strangers and acquaintances. At the thought of meeting new people I can already feel my stomach churning – an assistance dog would help alleviate that anxiety. 

They can be trained to either bark or paw at the owner’s leg as if they need the toilet if you make a hand signal at them – providing an excuse to get out of lessons, volunteering, training, or work if the owner is too anxious. It’s good to say autistic people can leave class at any time if needed, but it’s not always that easy. When I need to go, I need to go before I have a meltdown (Type of anxiety attack), not in five or ten minutes after the teacher has finished talking to me. 

Dogs can be trained to lie on you like a weighted blanket at night if they feel you shifting about a lot in the night – a method that reduces anxiety in autistic children and adults, without the internalised stigma of using a weighted blanket. Or, for an owner with anxieties in crowds, to ‘block’ between the owner and the crowds. 

So there we have some of my reasons behind needing an assistance dog. But how am I going to go about getting one? I’ve got to admit, it’s not going to be easy, but it’s something I need to do. There is one charity in the UK that trains up assistance dogs for autistic children – but only up to ten years old. There is also one that trains up assistance dogs for adults with mental health conditions, but their waiting list has been full and closed for a year or more. My current option I am looking into is a company in Ireland that trains assistance dogs. It costs £5000, plus 23% VAT (Which is not currently claimable back, but is probable that it will be after a court ruling in the future that the dogs are a necessary disability aid.) Then there is the cost of a ferry, and accommodation for a week for myself, my Mum and my support worker to go over to personalise the training of the dog. 

Overall, the cost is £7000, which will be my main barrier. I am hoping to do some fundraising, sell some things, possibly do some fundraising events such as bake sales, sponsoring, etc. It’s very early days, but I am hopeful that this is something that could make a real difference to my life and enable me to mostly live independently. 

I hope you enjoyed reading my blog, keep tuning in for another update soon! 

Thanks 

Sam