We asked you to share your experiences of Access to Work, including what it helps with, what you find difficult and what could be improved. The quotes throughout this blog reflect real experiences from across the community.
Access to Work: voices from the muscle wasting community
Access to Work is designed to help disabled people start or stay in work. It can fund practical support, like specialist equipment, travel or support workers.
What does Access to Work help you with?
For many people, Access to Work provides essential, practical support that makes employment possible.
“I receive Access to Work support each month to cover my carer’s train ticket so they can accompany me to the office, as I’m unable to travel independently or work without physical assistance. This part of the scheme works well for me; the claims system is easy to use, and reimbursements are usually processed within a month.”
When support is in place and working well, it can remove barriers that would otherwise prevent people from doing their jobs.
But this isn’t everyone’s experience.
“They were so unhelpful when I was looking for support to stay in my teaching post.”
What issues do you have with Access to Work?
A common theme across the community is how difficult it can be to access support in the first place.
“Lack of understanding of needs and huge delays.”
“The time it takes to get support and the way they question you. Everything is put in your way!”
“They assessed me and made recommendations, but nothing was put in place.”
The process feels repetitive and exhausting for some, requiring them to constantly explain and justify their needs.
“I was repeatedly required to explain what muscular dystrophy is and how it affects my daily life… I was asked deeply personal and sensitive questions… At times, I felt I was not believed.”
This experience can be particularly challenging for those in professional roles.
“I was placed in the uncomfortable position of having to justify the severity of my disability simply because I am a barrister, as though professional competence and disability were mutually exclusive.”
Living with that uncertainty can have a lasting impact.
“I lived with the constant fear that a reduction in my support worker’s hours would jeopardise my ability to continue working.”
How does a lack of flexibility affect you?
Even when support is agreed, it does not always reflect the realities of working life.
“The difficulty is the lack of flexibility around taxi travel… Access to Work will only reimburse journeys to the exact postcodes agreed at the initial assessment.”
For people whose work involves travel or different locations, this can create additional barriers.
“Due to long backlogs… I waited eight months for a response… I frequently have to pay for taxis myself when attending work-related events.”
These delays and restrictions can mean people are left covering costs themselves or missing out on opportunities.
What could be done to improve Access to Work?
Many people feel the scheme could be improved by working more closely with disabled people and employers.
“Working with businesses and disabled people.”
Others highlighted the importance of more human interaction within the process.
“If you could see someone face to face.”
There is also a strong sense that a more understanding and respectful approach is needed.
“I sincerely hope that Access to Work can adopt a more informed, empathetic, and respectful approach, so that applicants are not discouraged by the very system meant to support them.”
The future of Access to Work
Experiences of Access to Work vary widely. For some, it provides vital support that makes employment possible. For others, the process of accessing that support can feel like a barrier in itself.
What’s clear is that the scheme has the potential to make a real difference, but only if it works in a way that reflects the realities of disabled people’s lives.
Sharing these experiences helps build a clearer picture of what is working, what is not, and what needs to change.
What is Muscular Dystrophy UK doing about Access to Work?
We’ve been calling on the UK government to improve the Access to Work scheme so that it works better for people with muscle wasting and weakening conditions.
Recently, the UK parliament’s Public Accounts Committee has been running an inquiry into Access to Work. We submitted evidence to the inquiry, which included some of the quotes above. Our evidence focussed on the following themes:
- Delays in receiving support and a lack of flexibility in the system
- A lack of understanding of muscle wasting conditions from both the Department for Work and Pensions and employers
- A lack of awareness of the scheme amongst both disabled people and employers
- Poor administrative practices
- Cuts to Access to Work awards and existing rates of pay
You can read our full submission here.
We are also working with partner organisations in the Disability Benefits Consortium (DBC) to hold the UK government to account on Access to Work and to ensure that the Department for Work and Pensions works with disabled people on any changes to the scheme.
