• Article: Jun 27, 2016

    A leading peer has told disabled people to "wake up" to the reality that they could lose many of their hard-won rights if the UK votes to leave the European Union (EU) later this month.

    In an impassioned plea, Baroness [Jane] Campbell begged other disabled people not to abandon the EU, which she said acted as a "double lock" on disability rights.

  • Article: Jun 27, 2016

    DWP sentences man with learning disabilities to a life of job searching

    UPSET: Edward West has criticised the DWP for deciding he is fit for work [Image: Northern Echo].

    UPSET: Edward West has criticised the DWP for deciding he is fit for work [Image: Northern Echo].

    Edward West is absolutely right; the Conservative Government couldn't care less about people like him.

    After six years of persecuting the sick and disabled, it is clear that Conservatives consider people like Edward West to be - shall we say - surplus to requirements.

    So they'll get no more help from state funds and will be expected to find their own way in the world. The Tories know their choice will put many people in their graves but simply don't care.

    And for those reading this who are still, after all this time, saying, "He doesn't look ill": Take a good, hard look at yourself in the mirror.

    I'm willing to bet you didn't think you looked ill, either.

    'The government doesn't care about people like me', says a man with learning difficulties after being forced to find work.

    Disabled Darlington man Edward West has been considered unable to work for the entirety of his adult life.

    At the age of 44, he must now look for full time work within an hour's commute after the Department of Work and Pensions unexpectedly declared him fit for employment.

    Mr West lives in sheltered accommodation, has significant learning difficulties and needs the support of a carer several times a week.

    Source: Man with learning disabilities told to 'go find a job' by DWP (From The Northern Echo)

  • Article: Jun 27, 2016

    Bethanie is 13 years old and loves animals, swimming, art, ice skating and gymnastics. Bethanie has Ehlers Danlos Syndrome (EDS).

    Ehlers Danlos Syndrome is a GENETIC and physical connective tissue disorder. However, Bethanie is being held against her will, and the wishes of her family, in Bursledon House paediatric psychiatric unit at Southampton General Hospital. She cannot eat or drink, so she is fed through a tube (Hickman Line) into her heart. She is told that she cannot leave until she is off her blood feed (TPN). But until her gastric problems are addressed by EDS specialists it is impossible for her to feed normally, so she needs TPN to survive. Her TPN can be provided at home, she doesn't need to be kept in hospital.

    There is still a dispute over Bethanie's official diagnosis. She has been diagnosed with Ehlers Danlos Syndrome III. However, some medics believe that Bethanie has somatoform disorder. This is a psychological condition where the brain and body do not communicate together in the way they should. This is thought for various reasons. One reason given is that her symptoms are inconsistent. This, however, is the very nature of EDS - the collagen works inconsistently and so sometimes the body can achieve things one day that on the next day are not so easy.

    But what these medics need to realise is that in the middle of this debate is a little girl. Just a little girl like their daughters, their cousins, their nieces, even themselves. A little girl who deserves better. A little girl who has been through a lot.

    Give this little girl the treatment she needs. We do not deny that having a chronic condition does require some form of psychological support, but that is not the cause of Bethanie's condition.

    Bethanie can go home on TPN whilst we wait to see EDS specialists as an outpatient to look at her bladder, joint and gastro problems. Hopefully this will result in coming off of TPN altogether and an overall better quality of life than being in hospital.

    Let this little girl have access to her life. Recover her life by letting her live it!

  • Article: Jun 25, 2016

    In the New Years Honours 2016, I was appointed Member of the Most Excellent Order of the British Empire for my services to Young People with Disabilities. Then on Thursday 9th June 2016, I received my MBE in my Investiture at Buckingham Palace, presented to me by His Royal Highness The Prince of Wales. It is a huge honour to be appointed an MBE, especially given my young age, I'm only 22, and the fact that my period of work hasn't spanned decades like many others. However, it's highly unlikely that my life, and my work, will span decades, which makes it even more special to receive the Honour whilst I am at the peak of my work, and am still well enough and able to attend my investiture, and able to enjoy being a Member of the Order. It is a huge honour to be recognised for my work. My charity, health and disability work gives me a positive focus away from the pain, suffering and struggles I have as a result of my conditions, and the restrictions the conditions and their complications impose upon my life. To have something to focus on, a purpose in life and an ability to use my experiences - good and bad - constructively to benefit others, is very important and a key component of my coping mechanism. Being able to distract myself with my work, and at the same time, advocate for, represent and support others with chronic and complex conditions and disabilities is a great way to use my energy in a productive and worthwhile manner - however limited my energy may be on some days.

  • Article: Jun 25, 2016

    Tony Clough has been appointed an MBE in the Queens birthday honours after campaigned for the provision of Changing Places over the last decade.

    Tony Clough, 38, of Lichfield, has campaigned for Changing Places toilets with space for the user, their carer, a changing bench and a hoist.

    His work began after seeing his mother, Margaret, struggling to meet the toilet needs of his severely disabled sister, Julie, when they were away from home.

  • Article: Jun 25, 2016

    Leaving the European Union (EU) would put at risk significant improvements that have been made to the lives of disabled people over the last 15 years, according to three of the country's leading academics working in the disability rights field.

    In the strongest statement yet on why remaining in the EU would be the right choice for those concerned about disability rights, the trio say in a new document that disabled people would be "stronger and safer" inside the union.

  • Article: Jun 20, 2016

    In the UK, government cuts to the NHS and social care have left many local services struggling to meet demand, leaving families to fill the gaps - often with little support. Caring for loved ones is, of course, often hugely enjoyable and rewarding, but it can also be challenging - physically, psychologically and economically.

  • Article: Jun 20, 2016

    Three-quarters of carers (74 per cent) with some of the most intensive caring responsibilities say their community does not understand or value their caring role, resulting in high numbers of them struggling to balance other areas of their lives with caring.

    In addition, full time carers are twice as likely to be in bad health as non-carers

  • Article: Jun 20, 2016

    I'm three months into the new job and this is my first Carer Week. It's really impressive to see how much activity is taking place across the UK. Local carers services have been brewing up a whole range of events in local libraries, town halls, shopping centres, social media and much more besides. Carers Trust have been on TV and radio, raising awareness of carers and the work of our local carers services.

  • Article: Jun 20, 2016

    This is a hugely exciting time for the Green Party - and for progressive politics in Britain. By seeking the nomination to become the first job-shared leadership in modern British politics we are demonstrating our pledge to 'do politics' differently.

    We share a burning ambition for our party to have more of an impact than ever before - but neither of us felt we could do the job alone.

    Like any parent, Jonathan, who once confronted David Cameron over his battle to get his son into a local school, struggles to balance work and family life. With the barriers that a disabled child like his son Samuel faces, he just couldn't dedicate the time needed to be the sole leader of the Green Party.