Evidence for change
By gathering evidence from patients and clinicians on a national and local level, we are been able to highlight gaps in essential care and services. Together with families and individuals we campaign for improvements to essential health services.
The All Party Parliamentary Group launched an inquiry in December 2008 following concerns that the existing specialist services were vulnerable through their reliance on charitable funding. The APPG inquiry investigated access to specialist, multi-disciplinary care for people living with muscular dystrophy and related conditions. The All Party Parliamentary Group exposed gaps in care, early deaths and poor support for people affected by muscular dystrophy and related conditions.
In September 2008 our national survey, called State of the Nation, revealed that families with muscle-wasting conditions are experiencing severe financial hardship and many are seeing loved ones' lives drastically shortened due to a lack of specialist care.
In a series of reports, medical professionals set out a compelling case for national commissioning of services for patients with neuromuscular disease. It is simply unacceptable that many patients are not receiving good levels of care.
The evidence in our report, the case for effective wheelchair services, shows that across England too many people are forced to wait far too long for the electric wheelchairs they need while others are denied essential features that aid independence and improve quality of life. Scandalously, patients and their families are often abandoned by the NHS and left to pay for these vital pieces of equipment themselves, at a cost of several thousand pounds.
Trailblazers tourism report
The Disability Discrimination Act (DDA) 1995 aims to end the discrimination that many disabled people face. The Act was significantly extended in 2005 to cover rights to goods, facilities and services. However, many disabled people are still unable to access adequate levels of service when planning and taking holidays in the UK and abroad.
Trailblazers education report
In an increasingly crowded job market academic qualifications have become more important in securing employment. According to the Higher Education Statistics Agency (HESA) the number of wheelchair users attending university increased by almost 230% between 1995 and 2008, yet Trailblazers continues to hear of difficulties and challenges that disabled students face when planning for and studying at university.
The Trailblazers began to investigate this issue after a number of unpleasant incidents affecting some Trailblazers, who were branded "fire-risks" by cinema staff members and were forced to sit in wheelchair seating areas that only had bad views of the screen. The Trailblazers surveyed more than 125 cinemas across the UK and found that the worst access for disabled people was often at the major UK cinema chains.
The Disability Discrimination Act 1995 (DDA) and government initiatives like the Guaranteed Interview Scheme, Access to Work and the New Deal for Disabled People were introduced to ensure that young disabled people have more opportunities to get into and retain employment.
This report exposes many of the barriers faced by disabled jobseekers with the necessary skills from gaining access to employment. It also provides essential information on how to get into work and stay there.
Despite the Disability Discrimination Act of 2005 stating that transport service providers are obliged to make 'reasonable adjustments' if their services are not fully accessible to disabled people, our report shows that many young wheelchair users and people with mobility difficulties face serious challenges when accessing public transport compared to their non-disabled peers.
This investigation into accessible housing and the services of the UK's housing providers was instigated following concerns raised by members of the Trailblazers network and their families when searching for accessible accommodation to rent or buy. Members reported having to wait years to find wheelchair-accessible homes, despite local authorities providing funds for adaptations to the homes of thousands of disabled people every year.