This week (19th-25th May) is National Epilepsy Week and to show my support for the cause, I joined my fellow MSPs for a group photo which highlighted this years ‘many faces of epilepsy’ theme.
Epilepsy is still the most common, serious neurological condition in the world but it impacts each person’s life in a unique and individual way. Epilepsy affects men, women and children of all ages from every ethnic group and social status. The outlook is brighter for the half whose seizures are well managed with medication. The picture is less rosy for almost a fifth whose epilepsy care could be further improved while the remainder face a difficult time, as do their families and carers, due to uncontrolled seizures.
Epilepsy Scotland is calling on the Scottish Government to tackle this treatment gap and enable seven in 10 people with epilepsy who could become seizure free to receive optimum care. This would save the NHS money and afford an improved quality of life for thousands of families up and down the country. According to Epilepsy Scotland’s 2011 manifesto, an estimated 9,750 people with epilepsy could become seizure free if their condition was better managed. This would save the NHS around £2.36 million a year.
I want to help tackle this issue. I am happy to be one of the many faces of epilepsy supporters in Scotland and to develop greater public awareness and understanding of epilepsy.
As a patron of HemiHelp, I was honoured to be invited to speak at the 10th Anniversary of the Children Helping Children concert in aid of the charity at the Cadogan Hall in London on Saturday 27th April.
The charity provides help and support to individuals and families affected by Hemiplegia and recently celebrated its 20th birthday. Since its first concert ten years ago, the event has raised over £500,000 which has allowed HemiHelp to continue to grow and help more children with hemiplegia than ever before.
The concert was fabulous and featured some amazing child musicians such as 11 year old pianist Fergus Macgregor and 9 year old violinist Kohtaro Harada. Hollywood star Damian Lewis, who is an active supporter of several humanitarian organizations and has been named as an ambassador for the Christian Aid organization, also attended.
I would like to thank everyone at HemiHelp for inviting me to speak at the concert and want to congratulate them not only for the great show they put on but for the important work they do all year round for young people with hemiplegia, their families and the professionals who support them.
Here is the speech I gave at the concert:
“Since being elected to the Scottish Parliament in May 2011 my life has changed dramatically – some changes have been for the better and some have been for the worse.
One of the proudest moments I have had in these last 2 years has been receiving the phone call from Simon Crosby, Chairman of HemiHelp asking me to become a patron of the charity. I am deeply honoured and privileged to have been asked to take up such an important role and I am delighted to have been asked to join you all here tonight in what has been a fantastic evening.
There are a few things about me that distinguish me from other members of the Scottish Parliament – I’m the youngest female member of parliament, I am one part of the first father and daughter team of parliamentarians with my dad being elected to serve his community in 1999 and I am the only member with hemiplegia.
For those of you who don’t already know hemiplegia is a disability that is caused by damage to the brain (most often before or around the time of birth) and it results in a weakness and lack of control in one side of the body – a bit like the effects of a stroke. Hemiplegia isn’t just a physical condition – around half the children have additional difficulties, some medical in nature, such as epilepsy, visual impairment or speech difficulties. Many children have less obvious additional challenges, such as perceptual problems, specific learning difficulties or emotional and behavioural problems. Every day in the UK between one and two babies are born with it, which means that up to one child in 1,000 is affected by this lifelong condition.
Before I joined the parliament I didn’t really think about myself as a disabled person. I am the oldest of 3 children and I have never been treated any different to my younger brother or sister. My parents never stopped me trying anything when I was growing up, that led to me trying Irish Dancing and the Sea Cadets – sadly a career never beckoned in either of these fields. I was the only female on the school football team, the goalkeeper in the netball team and one of four squad members of the badminton team…now I’m not saying I was any good at any of the sports but I didn’t get the nickname shivvychenko for nothing!
The proudest moment of my life so far might seem strange to some people but it has great significance to me – it was the day I learned to ride my bike without stabilizers, I may have been 11 years of age at the time, somewhat older than the average age to learn to ride your bike but I got there in the end.
As I said my childhood seemed perfectly normal to me therefore I found it disconcerting to join the Scottish Parliament and suddenly be asked about being disabled on a daily basis. Some opposition politicians approached my dad to ask him what my disability was, never daring to approach me and ask me directly. Some colleagues started to try and empathise with me by sharing stories of the time they broke their arm and how that gave them an insight into my daily life. Some people from organisations were a little bit bolder than this and just asked me outright when I had my stroke or what happened to my hand and was it sore. Never before in my life have I been asked such questions and here I am being asked them in the very place we should be promoting equality and diversity.
Such was the interest in my disability that if you typed my name into an internet search engine the second most popular search result was Siobhan McMahon MSP Disability, as a result I felt that the matter had to be addressed in Parliament during a speech on Welfare Reform. It wasn’t a speech I enjoyed giving however the results have been worth it. Shortly after my speech I received a tweet from Joanna Sholem, a volunteer at HemiHelp, thanking me for raising awareness of my disability, this was the first time I became aware of HemiHelp and I’ve never looked back since.
I am grateful to Jo for opening my eyes to this fantastic organisation and to the tremendous work they do.
Growing up is always a hard thing to do but doing that with additional needs and little support makes that process somewhat harder, I had 4 operations during my time at secondary school. The pain of the operations was nothing in comparison to the schooling I lost out on and the disengagement I felt from my school friends during those times. I know that my life would have been easier at that time if I had known about HemiHelp. I found the recent article in the spring edition of the HemiHelp magazine by Lucy Pilgrim truly inspiring. Lucy shared her experience of secondary school in order that others could gain a little encouragement from it. I can only imagine the support Lucy’s article has given to others currently at school to overcome the obstacles and battles they will face on a day to day basis. I wish I had known someone like Lucy when I was growing up. It is by knowing that you’re not alone that gets you through the tough time and makes you appreciate the good times even more.
That is why the services that HemiHelp offer are so important to young people and their families. From the helpline that is run by volunteers who have personal experience of hemiplegia, the “try it” fun days that occur throughout the country, the conferences run for parents and professionals, the pen pal system or the transition service which supports people aged 16-25 who need assistance moving from education to employment, HemiHelp is there every step of the way. The diversity of services they provide is nothing short of astounding .
Sharing my own experiences is not something I enjoy however the reason I do this is very simple – I don’t want another young person or their family having to go through some of the things my family and I have had to go through.
As a result of the increased scrutiny in me I began to have questions of my own. How did my parents feel when I was born? Were my brother and sister embarrassed of me when we were growing up? Who would employ me if I didn’t have a University degree? I also had questions about my future, would my friendships survive the strain of more operations or when I eventually end up in a wheelchair?
I know that these questions are normal however I also know that if I had the support of HemiHelp at that time the process would have made much easier. They would have shown me that the things I want to achieve can be achieved. They would have shown me how to tie my own shoe laces and other practical measures in order to continue to lead an independent life. I am grateful that although I didn’t know of their existence when I was growing up many young people across the UK have had the support HemiHelp offer and many more will benefit from them in the future.
Recently I requested my medical notes to learn the lessons from my own health treatment in order to help other young people in my community. One of the things that stood out for me was this:
On 6th November 1984 the doctor noted and I quote “the right foot is entirely normal” however on the 12th November 1985 the doctor notes “she has an obvious right hemiparesis with achilles tendon tightness”. What a difference a year makes!
I know that my experience is not unique and that is why I wrote to my own local health boards to ask them what clinics they have for children, in particular, with hemiplegia and if they had support groups on offer. The response I received from NHS Lanarkshire was welcomed, the Board have now put up posters advertising HemiHelp in all of their hospitals and posted a link to HemiHelp on the official website. But I can and will do more.
Every year I sponsor Disability History Month in Scotland; this gives me the opportunity to talk about the positive aspects disabled people make to our Country. This year I hope that I will be able to sponsor a similar event for HemiHelp, to raise the awareness of this amazing organisation in Scotland.
I know that those of us in this room know the true value of HemiHelp but it is up to all of us to make sure that they can continue to support families across the UK. It is up to all of us to create awareness of this organisation in our families, between our friends, in our workplaces to make sure that young people with hemiplegia get the support they need. I know that my life would have been different with the support of HemiHelp and I know that my life has changed for the better since HemiHelp came into it. I can only thank HemiHelp for all that they do not just for me but for every person they have helped throughout the UK.
Thank you again for the kind invitation to attend this tremendous event tonight. Enjoy the rest of your evening.”
I was delighted to give my full support to “see me”, Scotland’s national campaign to end the stigma and discrimination surrounding mental health.
Since its launch ten years ago, “see me” has worked tirelessly to highlight mental health issues, and to challenge the ignorance and prejudice with which they are frequently portrayed and regarded in the media and public life. Its new campaign seeks to change public and media attitudes towards mental health, and to ensure employers respect and value those within their organisations with mental health difficulties.
Whilst the campaign has made great strides, I believe greater emphasis could be placed on addressing depression amongst young people and those with disabilities.
Young people with depression often fall prey to feelings of hopelessness, fear and alienation. We have a responsibility to make sure they know that depression is nothing to be ashamed of, and that should they wish to discuss their feelings, they will be treated with sympathy, understanding and compassion.
Campaigns such as “see me” do an excellent job of publicising issues related to mental health. However, it is for us, as members of a civilized society, to heed that message, and to challenge discrimination and prejudice wherever we encounter it.
I participated in last Thursday’s debate in the Scottish Parliament about the closure of Remploy factories in Scotland. My contribution can be viewed on the BBC’s Democracy Live at 53.40.
The coalition Government’s programme of closures has already had a devastating impact on Remploy workplaces across the UK. What’s more, and despite the Government’s assertions to the contrary, not enough is being done to secure employment for the disabled workers who have lost their jobs.
To date, 31 factories have closed with the loss of 1061 workers, only 35 of whom have since found work.
In Scotland, the former Remploy factories at Aberdeen, Edinburgh, and Netherton, in my own region of Central Scotland, have already closed. Last week, we heard that the factory at Springburn, which manufactures wheelchairs for the NHS, will also close, following the breakdown of takeover talks. Altogether, over 100 disabled former Remploy employees will have lost their jobs.
As I said during Thursday’s debate, politicians in Scotland have a responsibility to help protect the remaining Remploy factories, as well as other sheltered workplaces. We must also strive to assist disabled former Remploy workers secure alternative employment. To facilitate this, I urged the Scottish Government to follow the example of the Welsh Assembly, which has already assembled a £2.4 package to encourage suitable businesses to employ former Remploy Workers.
In addition to this, the Scottish Government should use its upcoming Public Sector Procurement Bill to ensure that sheltered workplaces have access to public sector contracts.
Unfortunately, we cannot stop the coalition Government’s attack on Remploy. However, we can mitigate its effects. There was a large degree of consensus across the Chamber on this point, and I look forward to working alongside the Scottish Government on this issue.
I recently attended the latest committee meeting of the North Lanarkshire Disability Forum in Motherwell.
Formed in 1991, the North Lanarkshire Disability Forum is a voluntary organisation run by disabled people, for disabled people. It offers support, information, advice and guidance to disabled people and their carers across a range of issues, including community services, transport, health, welfare, and housing.
As ever, I was struck by the level of commitment exhibited by the committee members on behalf of those they support and represent. They spoke with passion – and frequently anger – about the many challenges facing disabled people across North Lanarkshire, in particular the punitive changes to disability benefits contained within the Welfare Reform Bill.
As well as discussing the ramifications of the Welfare Reform Bill, the NLDF raised a number of other issues pertaining to disabled people, which I am determined to pursue with the relevant authorities.
Sadly, and despite the vital service they provide, the NLDF exists within a perpetual funding crisis. With no core funding, the organisation is left in a constant state of flux, with no concrete certainty as to its operating budget from year to year. Given the increased pressure and demand that will undoubtedly result from the Welfare Reform Bill, this state of affairs is highly unsatisfactory, and the Scottish Government must act now to ensure that the NLDF, along with other community and voluntary organisations, has the funds it needs to continue providing support.
Organisations like the North Lanarkshire Disability Forum are of critical importance; we must do all we can to protect them, whilst ensuring that they have the necessary funds to expand and improve their services.
I also spoke in a Scottish Parliament debate on the UK Government’s Welfare Reform Bill, during which I criticized proposals to replace the Disability Living Allowance (DLA) with the Personal Independence Payment (PIP), a change the Government hopes will cut the disability bill by 20%, an annual saving of £1.45 billion by 2014-15.
Depending on how the plans are implemented, this means that between a fifth and a third of Scotland’s 340,510 claimants could lose their current benefits.
I have lived with disability all my life and I take many of its consequences for granted. Every so often, however, I pause to consider its implications. I cannot drive a car without adaptation. I cannot tie my own shoelaces. I cannot chop an onion unsupervised. However, my problems are nothing to what many disabled people are forced to contend with. On their behalf, I passionately object to the Welfare Reform Bill’s contents.
We all remember the Tories’ commitment to creating a compassionate society. The Welfare Reform Bill makes it perfectly clear that that commitment was not worth the Michelin-starred napkin it was scribbled on. Under this UK Government, the compassionate society has morphed into the suspicious society.
The SNP Government’s reluctance to state how it plans to deal with the proposals will only add to the anxiety and stress that are being felt by the thousands of disabled people. SNP members are forever eager to remind us that things would be different if more powers were devolved. Now the SNP Government has a chance to show its mettle in the full gaze of the public eye.