Independent Advocacy

My particular areas of expertise are in the following areas:

• NHS Continuing Healthcare (NHS CHC)
• NHS Children and Young People’s Continuing Care (NHS CYPCC)
• Personal Health Budgets
• Care Act Advocacy
• NHS Complaints
• Benefits-Related Advocacy
• General Healthcare, Patient or Adult Advocacy
• Advocacy to Support The Transition to Adulthood

Specifically experienced in the following condition groups, needs and so on:

• Complex medical needs – including those dependent on artificial nutrition (TPN/HPN, enteral nutrition), ventilation and/or respiratory support, home intravenous therapies, stomas and bowel or bladder diversions, permanent or intermittent catheterisation, life-sustaining interventions, acute interventions and others
• Life-limiting or life-threatening conditions
• Palliative and end of life care recipients
• Physical disabilities
• Long-term conditions (all) – but with particular expertise around:
  • Neuromuscular diseases, including mitochondrial myopathies
  • Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders
  • Rare gastrointestinal neuromuscular and motility disorders
  • Genetic Disorders and Rare Disease

I have a number of areas of particular expertise and am always seeking to learn more to enhance my practice. I always give my utmost to my clients and respect and value their immense knowledge and expertise in themselves or their loved one and the conditions and needs they live with.

Likewise, my own lived experience directly enhances the work I do; I implicitly understand the system since I am always accessing the system and facing many of the same issues in my own life. My clients often comment on how much more I “get” it compared to most professionals, and how different the relationship is as people truly know I understand their experience, their battles, their exhaustion and frustration, and as one client put it “you were the first person who listened to me and heard what I said”.

Every client is a learning opportunity and I value greatly the contribution of my clients to my knowledge and skills. I am privileged to have been part of the journey for hundreds of individuals, whether a one-off support or ongoing work, and to help them move forward in their lives in a way that makes sense to them and afford them the agency and autonomy they so often are prevented from having.

I’m an independent advocacy professional who can be commissioned to provide support in a number of ways:

• Directly commissioned by patient/family (adjusted fee/rate for this service)
• Commissioned by the CCG or Local Authority
• Commissioned by the individual from an existing care package 
• Commissioned by a charity supporting the individual/family 

My advocacy service is quite unique in many ways. Firstly, I’m an independent individual offering this service through my self-run small business, of which I am the only staff member; I am not part of a statutory body, an advocacy organisation, a charity (although I do provide advocacy through some charities), nor am I a company that puts profits above people. I’m an independent individual offering a personalised, 1:1, dedicated and committed service. I run this service as an individual who is passionate about this work, who ensures she has the time to give her utmost to every client and who is known for delivering a high-quality service which is truly personalised to the need of that individual. She is also known for her commitment to championing the rights, voices and agency of individuals, holding professionals to account where necessary.

I also conduct almost all of my advocacy work remotely, using the wonders of technology. This was the case even before the COVID-19 pandemic. Working remotely allows me to transcend geography and travel to provide the service needed by my client without borders and barriers. The other factor I have to consider is my own accessibility needs; I could not get into someone’s house if they did not have wheelchair access. I utilise a lot of different technologies and platforms in the conduction of my work: this includes remote attendance in meetings using videoconferencing and telephone facilities; conducting my ‘visits’ and case communications utilising telephone, videoconferencing software, email, WhatsApp and social media platforms (whichever the client is most comfortable doing, but also bearing in mind the GDPR); utilising different technologies to facilitate my role including google docs for collaborative document editing and compilation, online secure (GDPR-compliant) file hosting platforms with shared folders for dual access for myself and my client; and others. I operate in some niche areas where not much advocacy is concentrated, providing expertise on areas not well understood by others. My expertise in some of these areas, particularly Continuing Healthcare and Children’s Continuing Care, leads me to be called upon for input into cases by solicitors and other advocates and professionals.

I’m not a solicitor or legal advocate, but I will refer cases onto solicitors, prepare the case files for that solicitor to utilise, and work in tandem with the solicitor and the client to assist in the preparation of documentation, presentation and management of evidence, writing up of any case files and organising of this documentation in anticipation of the case moving forward legally.