Our top priority is providing an actually helpful and accessible service. We pride ourselves on our flexibility, informality, and lived experience.
We are a small team, made up of three people who have both personal and professional experience of what it really means to navigate the system while disabled or neurodivergent. We started this service because we know that a lot of the support out there tends to not be understanding or flexible enough. Because we are so small, we can treat each person we work with as an individual and build the support around you.
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Examples of how we’ve helped
Note – names and details have been altered to protect anonymity
Jenny has chronic fatigue syndrome and was applying for benefits for her disability through a Personal Independence Payment (PIP, formerly Disability Living Allowance or DLA). She sent an application in herself, and asked us to attend the assessment appointment with her, which seemed to go fairly well.
Following the appointment, though, she received a letter saying she would not be awarded any benefits because she didn’t seem particularly tired or withdrawn during the appointment.
Jenny sent an appeal to this decision, and we provided her with a letter explaining the symptoms of chronic fatigue syndrome, which were clearly not understood by the assessor, and testifying as to how the appointment had been run. The case went to tribunal and we attended this with her, as well. Following the tribunal, Jenny was awarded the highest level of PIP.
Joanna lives with her child and her father, who are both disabled. She finds the benefits system and all of the forms involved too confusing to go through on her own. She contacted us for support to apply for disability benefits for both of them, so that she could stop working and stay home with them without losing her Universal Credit (UC) payments.
We supported Joanna to apply for DLA for her child, Attendance Allowance for her father, and Carer’s allowance for herself. Because her father receives Attendance Allowance, she is no longer required to do work-related activity in order to receive UC. She is now caring for them full-time instead of having to rely on friends to be at home with them while she goes to work.
Mark has been struggling with an eating disorder since he was a teenager, but even when he was finally diagnosed his care kept focusing on the wrong symptoms because of his gender. At 23 he got in touch with us feeling like he was at the end of the road. His treatment was being offered by a personality disorders unit, which focused on emotional regulation, coping mechanisms, and self-harm behaviours.
While Mark did struggle with these, he knew they were all brought on by his eating disorder, which had continued to go untreated, so after every appointment he felt more and more hopeless. He had spent years asking for specialist treatment and showing his doctors pages from the Beat website, but no one was listening.
We spoke with Mark over the phone and put together a letter for his psychiatrist that outlined how he felt and what he was entitled to under the NHS constitution and treatment guidelines. Following this, his psychiatrist started the process of referring Mark to treatment through a specialist eating disorders clinic.
Who is the service for?
We are here to support anyone who is struggling to access the support they need. Our expertise is in disability and mental health, but we aren’t limited to this.
We are aware that there is a support gap. Services that are open to everyone, like a helpline, are very limited in what they can do. More practical, individualised support either comes at a high price or has strict criteria for access. It’ll also be based on what the service does, not what you need. If you fall into this gap, we might be the right service for you!
Holistic Advocacy is not an on-going service. If you have long-term needs because of a disability or mental health condition, we might not be the right service for you. Instead, we could help you in the short term to apply for what you need from your local authority.
We do not provide legal advice or any clinical support such as assessment or medical advice.
What situations can we help with?
- Getting the right support from the NHS
- Getting the right support from Social Care
- Reasonable adjustments (from work, education, or services)
- Benefits claims or appeals
- Making a complaint
What exactly will we do?
We aim to offer flexible and personalised support, based on what you need because of your condition/s and your situation. Generally, it will mostly look like a combination of these things:
- Listen to you in a supportive and non-judgemental way
- Do research about your rights and your condition
- Explain your rights and options to you
- Help you work out your goals
- Write letters or speak to professionals with you or on your behalf
- Attend meetings
- Help you to fill out forms
- Find and go through self-help resources with you
- Liaise with people in your life (if you want us to)
- Signpost you to other services that can help
- Put you in touch with professionals who can help
- Write a summary of your situation and an action plan, which you can then work through with a free local advocate
Do we know about your condition?
There is a chance we might not – between us we know a lot, but we can never know about everything. All of the team members are experts on OCD and related conditions and have experience with other issues such as eating disorders, trauma conditions, chronic illness, and neurodivergence.
If we haven’t supported someone with your condition before, we will inform ourselves through professionals, experts by experience, services, and clinical guidelines. You will not be charged for us learning about it and ‘catching up’ on the basics.
Whether we know about your condition or not, we also want to hear about what it’s like for you, and will never make assumptions about what you need without your input.
How much does it cost?
We aim to make the service affordable for everyone, so you will be charged based on your financial situation. You can take a look at our sliding scale to see how much you would be paying.
We hope to be able to offer free help in the future to people who most need it. Right now we don’t have any funding for this because a lot funders would ask us to only help certain people or make us focus on quantity, rather than quality, of service. This isn’t always the case, though, and we are exploring and applying for funds for a free service.