I was diagnosed with Epilepsy aged 12 having suffer regular seizures both Grand Mal/ Tonic Clonic and abscent seizures. I was medicated with the medication Epilim (Sodium Valproate)
The advice given to me by my Neurologist, was always to take my medication as this would help control my seizures, so trusting the experts always done so. When I first got pregnant with my daughter, my husband and I decided to have my ante-natel care at my local hospital as that was also where my Neurologist was based. Throughout all my pregnancies my medical team were aware I was on Epilim, and the advice my husband and I was given, was to carry on taking my medication and to increase my dosage of Folic Acid.
One day I saw on the news a lady talking about the dangers of Epilim in Pregnancy, how whilst pregnant it could affect the baby, which could result in the baby having a condition called FACS (Fetal Anti Convulsant Syndrome) I was speechless watching this. I knew there and then, the children had this condition. It was as if a light had been switched on, everything the lady was saying was exactly what I had been saying for years. I rang the news immediately and was put in touch with Janet Williams. To cut a very long story short after months of tests, Drs appointments my children were diagnosed with FACS SYNDROME – the medicine I was prescribed HAD affected my babies. As well as the diagnosis of FACS, my children also went onto obtain diagnosis of ;
• Facial Dysmorphic Features
• Cerebral Palsy
• Valgus Foot
• Speech & Language Delay
• Autisic behaviour/Dyspraxia
• Noise Intolerance
• Deafness and more
In November 2013, along with Janet Williams I Co-Founded FACSA – a parent/family support group for families affected by Epilim and other Anti Convulsant medicines. At the same time we also started campaigning in Government and have since been named as Government Campaign Group for Epilim (IN-FACT)
“It wasn’t until I got to middle school or high school that I had the cognitive development to understand that I could bring this state on deliberately,” Holly says. It was as a teenager that she began regularly skipping meals.
Louise, too, is ultimately grateful for her diagnosis because it proved that she wasn’t defective, just different. It also helped her understand why her eating and exercise rituals were so hard to break. Instead of completely eliminating these routines, she worked to develop new ones that would enable her to reach a healthy weight, which she did last year for the first time in 40 years. Life remains difficult for Louise, due in large part to her autism and severe anxiety. But the eating disorder she once had, at least, is no longer part of the problem.
Having worked with parents and carers of children and young people with Special Educational Needs and Disabilities (SEND) since 2003, I have extensive and in-depth knowledge of how the SEND system works and how services operate. With an excellent reputation of being a hands-on, local advocate of Children’s and Carers Rights I have a track record of going the extra mile to get the best results for families.
For 10 years I was involved with a Parent Carer Forum, developing the organisation and supporting a management committee of parents and carers to make it a success. I managed many projects and enjoyed watching our families and the organisation grow up!
I then developed the Yorkshire and Humberside Family Support Service for the national, award-winning charity Caudwell Children. I helped families in crisis to get the support they deserve through services, community groups and my team of hand-picked Volunteer Supporters who were from a wide range of backgrounds.
I then went on to be an Independent Supporter, helping families to understand the changes in the statementing process and providing hands-on support to get the best possible Education, Health and Care (EHC) plan for their child. Having been involved with the pilot for this new system I was keen to help families from the outset.
I am also involved with several other organisations which are dedicated to supporting and informing families of disabled children and young people – Bringing Us Together, Visits Unlimited and Justice Together – a new project from Bringing us Together that seeks to make information and support available to families whose children and young people have been detained or are at risk of being detained against their wishes.
I am part of national network of parent activists and professionals and if I don’t know the answer to something, or the right way to help someone, I can usually find someone who does.
It was filmed
25 35 years ago (thanks for those who noticed it’s even longer than I thought, by ten years), and yet some of the voiceover could as readily apply to what we’ve seen and heard about the failings at #SouthernHealth in the last few years. People left in beds or on beanbags because no-one had the ‘wit or wherewithal’ to imagine a future for them, to support them, to see them (as fully human). Lives lived and arranged around staffing tea breaks (motivational tea party anyone). Incarcerated people doing everything they can to subvert the system (or just trying to communicate – next step PBS bootcamp).
In many ways I think we’ve got nowhere in the intervening 25 years, and that is our responsibility, each and every one of us who make up our crappy society with ideals of containment, paths of least resistance and a discomfort of the sight, sound, smell of difference.
So we pathologise, and label, and snub out any hope or optimism or belief. We create a hell on earth with no imagined future and a sort of living purgatory for anyone who is different and those who love them.
In the last six months, since Southern Health had the Mazars draft, a number of families have complained that they were not listened to. While Southern Health have been orchestrating their PR operation to get some good press and apparently transform their substandard
care death reporting for people with learning disabilities or mental illness, here’s what families with the most recent dealings with them, had to say:
‘I think lessons need to be learned all around, the communication has been terrible for us to phone nine times about our concerns, I can see there is a lot of people talking in circles and not facing up to the truth that there was not a crisis care package for her and that was one of the reasons for her not being here today’ Doris Cranmer’s family
‘Southern Health failed to take into account the very strong feelings of the family that Emma was a suicide risk, particularly as the Easter Sunday was a significant anniversary for her. as it was the 20 year anniversary of her daughter’s death and She had shown signs of severe mental stress and had discussed feelings of suicide with them. Southern Health ignored the family’s concerns and released Emma home with the guarantee of a phone call at seven o’clock that evening. The phone call never materialised and Emma tried to commit suicide four hours later’ Emma Connell’s father, Peter Stuart
This builds on previous incidents too, in 2011 Victoria Nye’s father desperately pleaded with Southern Health:
‘Her death sparked a top-level inquiry by health bosses into care given to Victoria and the decision to allow her to return home, despite the desperate pleas of her dad, Graham, who warned she would be dead within hours of her release’
Teresa Colvin died in 2013, and despite the lessons apparently learned by Southern Health by then:
‘The hearing heard that during her stay staff failed to tell her husband about the severity of two incidences where she escaped the unit and the coroner accepted that Mr Colvin should have been fully informed…. Mr Colvin insists that “the signs were clearly there” to indicate that she was at real risk of harming herself and believes that Southern Health NHS Trust, which ran the service that has since been closed, “fatally let her down”… I have heard nothing that gives me any doubt that the risk assessment and the quality of management of my wife’s care over the weekend of her admission was inadequate and directly led to her fatality’
The following year, 2014, Jason Kelly died while under the ‘care’ of Southern Health:
‘Even on the morning of his death Mrs Kelly says she pleaded to have her son sectioned under the Mental Health Act’
Like LB, Eddie Pearse was only 18 when he died. He too had crossed the magic invisible threshold into adult [non] services, that within Southern Health seemingly equates to completely ignoring any family concern or involvement:
‘Once he turned 18 his care was transferred to Southern Health’s adult team meaning his dad was no longer informed of the issues affecting his son and prevented him from taking part in sessions… as soon as they hit 18 they are considered adults, there is no transition… there should have also been a much better handover between the youth and adult mental health service. The paperwork was passed across but there was no meeting’
These parents and family members were all psychic it seems, prophesying what would come to pass and completely sidelined and ignored by staff and systems at Southern Health. Sara predicted what would happen to LB, her greatest fear realised 44 days after she wrote it:
‘The thought of him having a seizure, in a locked unit, unnoticed, has generated a new level of distress I can’t describe. I don’t care how old he is, and I certainly ain’t treating him like a child, but I want to comfort him, and keep a watchful eye for any further seizures. And I can’t’
Not only did Sara predict it, she did everything in her gift to make sure Southern Health staff knew and could care for LB. Sara spoke to staff, she called them, she emailed them, she wrote a blog about it (and we now know her blog was being monitored for reputational risk purposes) and still it was no use.
Despite all of the (false) reassurances about learning lessons, families are still ignored, patients are still just collateral, an inconvenience. The worse thing is that this plays out in broad daylight, not a sniff of accountability, nothing.
25 35Geeorge Julien/Mazars/Blog years since Silent Minority, our most vulnerable are as vulnerable as they ever were.
This guide is for anyone, parent or professional, who is considering making a claim for Disability Living Allowance (DLA), on behalf of a child under 16 years of age who has a neurological or neurodevelopmental condition. This includes conditions like autistic spectrum conditions, ADHD, cerebral palsy, Down’s syndrome, epilepsy, learning difficulties, global developmental delay and acquired brain injuries among others.
Covering such a wide range of conditions means that, inevitably not everything in the guide will be applicable to all children. The intention is that you can use whatever is most appropriate and expand on it with your own examples.
We are very proud to announce that You Know's founder Jayne Knight has been shortlisted for Northern Power Women's Person with a Purpose. The winner is to be chosen at an award ceremenoy on 3rd March at Hilton Deansgate, Manchester and, needless to say, we are all rooting for Jayne to win!
From the Northern Power Women's website: "Northern Power Women is celebrating and showcasing role models who take positive steps towards transforming organisation culture in the north of England to benefit the talent of the future.
These are the only awards that celebrate the amazing women and men working towards creating gender balance in organisations and passionately supporting gender equality in the north.
Whether they’re working in the north or from the north, these awards will recognise the people leading the step change we need in business and raise their profile as role models to inspire current and future leaders. "
Go on Jayne - we're all behind you!
Disabled children: a legal handbook is an authoritative yet accessible guide to the legal rights of disabled children and their families in England and Wales. The authors expertly navigate the many, often overlapping, sources of law, explaining the difference between what public bodies must do to support disabled children and that which they may do.
The handbook aims to empower disabled children and their families through a greater understanding of their rights and entitlements. It is essential reading for the families of disabled children, their advocates and lawyers, voluntary and statutory sector advisers, commissioners, managers and lawyers working for public authorities, education, social and health care professionals, students and academics.
Each chapter has been adapted into a PDF for you to download for free.
Click here to view download links for each chapter (opens in new window)
I've worked with many people in different end-of-life and palliative care settings, from 10-year-old children to a woman who lived well into her 98th year. My aim as an end-of-life doula is to create an environment where the sorts of questions that no one has felt able to ask are broached and discussed.
No matter what someone is asking, the most important thing is that they are heard. That their pain and anguish, their hopes and dreams, their worries and their fears are all given a voice. When a person at the end of their life is talking, the greatest gift we can give them is to listen. Here are the most common questions I'm asked, and how I respond.
Read the full story with all 11 questions by Anna Lyons on the NetDoctor website (opens in new window)
Terminally ill patients are to be encouraged by an NHS Trust to write their own 'end-of-life plan' instructing doctors, nurses and family about their wishes for their final months, days and hours.
The document is based on birth plans that pregnant women commonly draw up with their midwives, and takes the form of a single-page grid detailing the personal wishes of the patient about every aspect of their care.
Subsections include: 'What will be important to me...', 'How to support me and those I love...', 'What MUST happen...', and 'What MUST NOT happen...' when the patient has months, weeks, and then just days to live, at the time of their death, and then afterwards.
Read the full story on the Daily Mail website (opens in new window)