Independent Advocacy

We are here to help you understand your rights and get your voice heard

Examples of how we’ve helped

Note – names and details have been altered to protect anonymity

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.

Erik struggles with sexually intrusive thoughts because of his OCD, which make him get stuck in worries that he might one day hurt someone, even though just the idea of this is deeply upsetting. He spoke to a psychiatrist who did not have any expertise in OCD, and the psychiatrist wrote in the assessment report that “Erik might pose a danger to children due to his sexual fantasies”.
This was not only incorrect and very upsetting to Erik, but also caused the mental health team to flag a safeguarding concern. Erik contacted us because he did not want the psychiatrist’s statement and information about the investigation to be in his medical records. We supported him to make a Request for Rectification, outlining why both the report and the flag that followed it were unnecessary, against guidelines, and harmful. Erik’s record now acknowledges that his intrusive thoughts are obsessional and unwanted, not fantasies or indicators of risk.

Jenny has chronic fatigue syndrome and was applying for financial support 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 PIP at the level she had applied for.

Our advocates are passionate individuals who have years of experience directly supporting people with disability or mental health needs in a number of different settings. We have chosen to use our knowledge and professional contacts to provide proactive and practical support in situations where there are unfair obstacles in place. These can be because of discrimination, poor funding, lack of knowledge or training, not being believed, and the complexity of the system.

Who is the service for?

Free advocacy, information, and support is available from many organisations around the country. We know from personal and professional experience that these can be very helpful, but some people or situations need a more personalised or expert level of support.

We suggest finding out what support is already funded for you by your local area or within a charity – read more on this here. If they are not able to help you, we might be. You can fill out a referral form letting us know about your situation, or email us to book in a 15 minute call to tell us about it. We will then let you know if we think we can help and what we can offer.

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
What exactly will we do?
  • Do research about your rights and your condition
  • Explain your rights and options to you
  • Write letters or speak to professionals with you or on your behalf
  • Attend meetings
  • Help you to fill out forms
  • 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 particular 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.

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