People born with 22q can have upto 180 medical issues. There are only very few 22q clinics that are for children in the UK. DiGeorge Syndrome is either having part missing chromosome 22q or having duplicated chromosome 22q. Within these clinics you get seen under Cardiology, Immunology, Psychology, Peadiatrics 22q specialists and referrals are made to multiple clinics there after if needed. Everyone with DiGeorge syndrome is affected differently and it's difficult to predict how severe the condition will be. Most children survive into adulthood. As someone with DiGeorge syndrome gets older, some symptoms such as heart and speech problems tend to become less of an issue, but behavioural, learning and mental health problems can continue to affect daily life. Many of those who reach adulthood will have a relatively normal life span, but ongoing health problems can sometimes mean life expectancy is a bit lower than normal. It's important to attend regular check-ups so that any problems can be spotted and treated early on. Having a 22q clinic for adults means they would be receiving lifelong checks and it could help improve health and have longer life expectancies. Just because turning the age of 18 doesn’t take away DiGeorge Syndrome or it’s health effects. It’s so important it is valued in all ages. Some young adults are experiencing mental health issues and having a clinic to observe and support them who have great understanding of the condition would be extremely beneficial. DiGeorge syndrome can cause a range of problems, but most people won't have all of these. Some of the most common issues are: learning and behaviour problems – including delays in learning to walk or talk, learning disabilities and problems such as attention deficit hyperactivity disorder (ADHD) or autism speech and hearing problems – including temporary hearing loss due to frequent ear infections, being slow to start talking and having a "nasal-sounding" voice mouth and feeding problems – including a gap in the top of the mouth or lip (cleft lip or palate), difficulty feeding and sometimes bringing food back up through the nose heart problems – some children and adults have heart defects from birth (congenital heart disease) hormone problems – an underactive parathyroid gland (hypoparathyroidism) is common and can lead to problems such as shaking (tremors) and seizures (fits) Other possible problems include: a higher risk of picking up infections – such as ear infections, oral thrush and chest infections – because the immune system (the body's natural defence against illness) is weaker than normal bone, muscle and joint problems – including leg pains that keep coming back, an unusually curved spine (scoliosis) and rheumatoid arthritis short stature – children and adults may be shorter than average mental health problems – adults are more likely to have problems such as schizophrenia and anxiety disorders.

I go to a self advacacy group twice a week in my area run by andfor adults with learning disabilities aged 18+ where we pay £5 each day and meet make friends go out on activities go out for coffee have laptops an ipad karaoke we also form relationships. This petition is to ask for more self advacacy groups in the UK like ours.

In the late 1970's Oliver's Battery community was divided by Badger Farm Road (now the A3090). A poorly designed underpass was built to connect the North and South of Oliver's Battery Road underneath Badger Farm Road. It makes it impossible for people in wheel chairs or mobility scooters to cross this junction as there are only steps to come up the southern end and no slope. It is very hard to use for young families with babies or toddlers in pushchairs or cyclists who for instance want to cycle to work to Winchester of from Winchester to IBM in Hursley . It forces them to risk crossing the road with fast traffic. This junction as well as the T-junction with the Ridgeway that lies in a bend are both very difficult and dangerous to cross even for cars that often build up long queues trying to to leave Oliver's Battery or Badger Farm. Serious road traffic accidents have become the norm in recent years. It is only a matter of time until someone might lose their life. With the lack of public transport facilities in Oliver's Battery its residents are isolated and makes them car dependent and many elderly people rely on the goodwill of their neighbours to drive them around. The best option with great benefits not only for the local communities but for much of Winchester would be to: - Fill up the underpass to create more space for a safe junction - Build a traffic light junction with priority for cyclists and public transport - Create a bus lane from the Sainsbury’s to the Pitt roundabout (westwards) - Build a cycle lane (or another bus lane) on the eastbound side of Badger Farm Road - Enable easy cycle routes: a) from Hursley via Oliver's Battery towards King's school, b) Along Badgers Farm Road to Sainsbury's, and c) towards Ridgeway/ St Cross and connecting Oliver's Battery with the new planned Leisure Centre at Bar End Benefits: - Safety for all types of traffic - End discrimination against people with restricted mobility - Promote active types of transport (Walking and Cycling) - Promote public transport by shortening travel times for buses during peak times (Who would like to get stuck in the car if you can get into to town faster in the bus?) - Save money that is wasted by keeping buses in congested road traffic Residents in Oliver's Battery and Badger farm are very concerned about these junctions and several attempts by the Parish council and local councillors to improve the situation over many years have been ignored. Some progress has been made only recently. Nobody can understand that even an attempt to reduce the speed limit on Badger Farm Road from 40 to 30 mph (that would cost almost nothing) was refused: The Police would not support it as they think that it will not be complied with by drivers. The main criteria the Police uses is that the existing mean speeds must be close to the proposed lower limit (mean speeds between the Sainsbury’s and Pitt roundabouts were recorded as between 34 and 36 mph, which was not considered to be close enough to 30 mph). People living here are very disappointed about the slow progress. Therefore, these urgently required modifications of Badger Farm Road must be part of the new the Winchester Movement Strategy.

Imagine being able to attend a relaxing welcoming course in an environment with no pressure or harassment regardless of your disability or health issue whether it's mental or physical problem and doing everything at your own pace illness can often cause loneliness isolation and often feel life is pointless although the Scottish government think that targets have not been met the wise group disagree strongly some people have went on to training employment and even voluntary work this course brings lots of posivity and that's why I feel so strongly about it continuing.

Our son Harry is 4 years old and due to start school in September. Harry was diagnosed with autism and other co-morbid conditions last year, just weeks after his 4th birthday. Our aim in getting Harry’s diagnosis at such an early age was that going into education with a diagnosis would be his best chance at thriving in school. We have worked so hard over the last two years to integrate Harry into his big sisters primary school to get him ready for the incredibly hard transition he will face in September 2018 when he starts in reception. Harry has specific medical and social needs for needing to be at this specific school, this was stated on his primary application form and supported with multiple letters from his paediatrician. Harry will now have to go to a completely different school, with no friendly faces, an unfamiliar building and hallways and playgrounds. He won’t recognise the uniform or the reception staff. He won’t be surrounded by the professionals who have been involved in his care for two years. He will be a lost little four year old, who already faces daily battles to understand the world around him, thrown into a completely unknown situation, all on his own because his medical and social needs have been disregarded. Harry won’t be the first or last child to be let down by the school admissions system in such a way but please help me try to ensure that children’s social and medical needs are made a compulsory part of the admissions criteria for our schools.

My son Tom is a 28 year old young man with an acquired brain injury. The injury occurred in 2007 as the result of an infection just 4 days after his 18th birthday. He was doing well in his A levels, and then this awful tragedy happened. For the past nine years, he has been supported for care and accommodation by Continuing Healthcare (CHC) funding. Tom's condition means that he needs 2-1 care during daytime. Although his needs have become greater in that time -- his epileptic seizures are more pronounced and frequent -- his funding has suddenly been withdrawn. Tom is very much at risk of harm without this care: he cannot look after himself, and his behaviour is often challenging and unpredictable. A hurried and insufficiently attentive review has judged him ineligible for healthcare funding, because although his needs are 'High', they are not deemed 'Severe' -- even though his 'Behaviour' and 'Cognition' clearly meet the panel's own 'Severe' CHC criteria. None of Tom's carers or family agree with this decision but our responses and appeals have been ignored. Please help by urging NHS Coastal West Sussex Clinical Commissioning Group to change their decision and continue to fund Tom, as they have been doing for the last nine years. Tom is so vulnerable and really needs your support.

EYS D&G provide free baby massage and stay, play & learn sessions across Dumfries & Galloway for children 0-5 years. They also provide a 1-1 service working in the home with parents and children who are experiencing particular challenges. Parenting can be very overwhelming and isolating especially in a large rural area like D&G. These sessions provide parents with a safe place to relax, bond with their babies and meet other parents. The play sessions also help parents to understand the importance of playing and interacting with their children. There is a lack of provision in D&G for children 0-3 and these sessions provide a much needed life line for parents and children. Through many personal experiences and feedback we know that these sesssions have given confidence to parents and the impact this has on the development of the child is invaluable. People have made lifelong friends through these sessions and they NEED to remain funded. The benefit of this early years funding will help build a confident, happy support network and therefore a healthier and happier future for the children and families.

as this is a large estate, ridge hill will have only 1 bus service running on the estate and expecting people especially those who are disabled like myself to walk 400meters to the hospital using the 389 which is ALWAYS FULL and no one likes to move to let us disabled sit down. i for one rely on the 387 to get directly into the hospital and i not being the only one thinks this is a disgrace. and all done without a public consultation!

Warwick house day centre in seaford East Sussex is under consultation for closure which was found out by carers for the clients who mainly suffer with dementia and disability and over 65 years of age. This was three weeks ago but a further document has been tracked back to October 2017 confirming it will close to save £59000. It is proven that without this service these clients will be isolated vulnerable and at risk, in addition many cannot cater for themselves so likely to cost escc increased costs for lunch and tea visits circa £1000 per week so no annual saving My mother attends she is 88 and this centre is a lifeline to her enabling her to remain at home with care in morning and evening and Monday to Friday she attends the centre is able to socialize exercise and be stimulated and receive lunch and tea of which she contributes greatly to her care financially. Remove this service she and her friends will be isolated at risk to Day to day tasks and her dementia condition will rapidly deteriorate. Most of this community have paid their due to this country for over 60 years and they need to be cared for in their final years, my mum has family around her but some of these clients have nobody, please stop this closure it is shortsighted and just escc balancing the books and saving the accountants jobs, my mum will really suffer if this centre closes please support

With the increasing popularity of the North Coast 500 (NC500), promoted in part by Highland Council, we are seeing ever-growing numbers of visitors to the NW Highlands and these people also require access to facilities in order to avoid more cases of human waste being left by the roadside. As part of its budget proposals for 2018/2019 Highland Council are closing public toilets at the following locations in the county of Sutherland: Achmelvich, Kinlochbervie, Rhiconich, Scourie, Smoo Cave, Lairg, Kylesku, Talmine, and Tarbet. The total estimated savings come to just £67,000 per year yet we consider these to be essential services, both for local people and tourists & others visiting the area. Additionally, these closures will discriminate against the elderly, infirm, disabled, and those with long-term illnesses whose ability to do without a regular rest break is impaired. Highland Council's suggested alternatives, such as making use of facilities in nearby businesses and village halls, are both impractical and presumptuous. Do the decent thing, Highland Council: Scrap your plans to close these public toilets.

It’s important because this man has been in the UK since 1974 and has worked since 2006 and has paid all has National Insurance and Tax contributions. Now the Government are saying they have no record of him. Whether they do or they they don’t, this man has just been diagnosed with prostrate cancer and now the NHS have stopped his treatment and in other words left him to suffer or even die! We must take action. This is against our human rights

Families in Waltham Forest with children with special education needs and disability depend on existing transport provisions to get their children to school, either because they go to a special school which is further from home, or because of their disability they are unable to travel to school unaided. In February 2018 lots of children in Waltham Forest who had previously been eligible for transport to take them to school were suddenly refused transport. This includes children with autism, deafness, cerebral palsy and other disabilities. Families have had to go through the stress and worry of amounting appeals against the decisions. Some families have had transport reinstated after appeal. It is not clear how many children and families that are affected have not appealed, either because they are not able to appeal or do not know they have the right to appeal.