Month: October 2019

I was so happy to read the Thank You article in the August edition of GScene.

THE acknowledgement of thirty three years working with people with HIV encouraged me to want to write a little more about my experiences at Terrence Higgins Trust (THT), Open Door and the changes to the benefits system over the period.

I was introduced to Terrence Higgins Trust (THT) in 1986 by a charismatic restaurant owner Sue Winter who catered for an evening social group for people with an AIDS diagnosis.

The group, Frontliners, (initially part of THT but later an independent charity) was made up of people with HIV who had progressed to AIDS. This was the terminal stage of HIV more than a decade before successful Antiretroviral Therapy became available.

I helped facilitate and cater for this social group. Because of the weight loss associated with advanced HIV the advice at this time was to follow a high fat, high protein diet, piling cream and mayonnaise into coronation chicken, pasta salads and the ubiquitous quiche. I prepared the food in my kitchen in Balham and this was driven by a volunteer to the Gray’s Inn Road offices of THT.

The group gave people an opportunity to meet and support others with poor health and a limited life expectancy. The people I met changed my life forever. Ron McAvoy set up the group with Jim Wilson and they led by example living life joyfully and facing the day to day practical and emotional challenges of living with AIDS.

On one occasion Ron had been asked to keep track of his new Kaposi Sarcoma (KS) lesions, a disfiguring skin cancer. Ron stripped off asking us to circle each lesion with a permanent marker and join them to form patterns of animals and flowers. The new lesions that appeared would be unmarked and counted. New lesions appeared, sometimes daily.

Ron and Jim supported people with AIDS with humour, compassion and practical advice. The loving care people received from their hospital doctors and nursing staff as outpatients and inpatients and voluntary services was extraordinary and supported these individuals to live their lives to the full and die with dignity feeling loved.

It was Ron and Jim’s concern with the practical issues of living well when unable to work that inspired my interest in benefits and social care. Quickly the demand for this type of help took me away from the kitchen.

I joined the Legal Services Group of THT becoming a staff member in 1988 and continued in this role for ten years.

The benefit and social care provisions changed rapidly through this period from Supplementary Benefit to Incapacity Benefit and Income Support. Under Supplementary Benefit claimants were given payments (Additional Requirements) to meet the actual costs of living with a disability from diet, to heating and laundry as recommended by a medical or social care professional. I believe this was the fairest system and each change since has made accessing help more difficult with less account of individual need.

In the early 1990’s the 40 page long self assessment form for Disability Living Allowance (DLA) was introduced. The form was simply impossible for many claimants in poor health to complete without help, increasing the need for advice.

DLA was the key benefit for people with disabilities. Elinor Harris and I started DLA Parties so that people with HIV could find out about the benefit and work through the answers together. People with HIV who attended supported each other emotionally and what one person with HIV said often helped others put into words their own experience. I have used group sessions to introduce claimants to key changes in the benefits system.

At Terrence Higgins Trust we were able to negotiate special exemptions from some of the tests for benefit. I was part of a team that gained exemption for some people with HIV for Incapacity Benefit, directly negotiating with Nicholas Scott, Minister of State, at Richmond House. The support we gave to people with HIV and our influence that changed the law was invaluable.

My own diagnosis with HIV in 1990 simply increased my commitment. I remained in employment despite long periods in hospital from 1995 by which time I had developed AIDS. In 1997 successful treatments quite suddenly appeared and like many others I responded well to treatment. I was however unlucky with side effects.

Some early drugs were particularly damaging. My eyes were badly affected and I lost two thirds of my retinas. I suffered recurrent pancreatitis that led to diabetes. One drug badly damaged my kidneys and I now have stage 4 kidney disease. However, when I think back to my early days at Frontliners, how bravely people with AIDS dealt with terrible health problems remaining determined to live life to the full, I count my blessings. The care I have received has supported, encouraged and inspired me and has always recognised me as an individual.

My move to Brighton in 1998 was inspired by my long friendship with Fr. Marcus Riggs. Marcus died of HIV related organ failure shortly after this. Fr Marcus had opened his home to people with HIV in the late 1980’s providing spiritual, practical and emotional support. He created Open Door and I have a cherished picture of sharing the decoration of 35 Camelford Street when the charity moved in the early 1990’s.

I continued to advise people with HIV in this day-centre that offered a cooked main meal prepared by an extraordinary team of volunteers including Gary Pargeter who went on to found Lunch Positive. Sometimes I even returned to the kitchen.

By this time people with HIV were supposed to be getting better and benefits became increasingly more difficult to claim or keep. Those whose physical or mental health were poor were often desperate and in my first week in Brighton a client committed suicide, throwing himself of Brighton Pier, because of his distress at facing a review of his benefits. This made me feel the responsibility of my role even more and increased my determination to facilitate claims for benefits for people with HIV.

In 2008 Open Door closed and the social care and advice services were absorbed by THT. I returned to where I had started. But the climate became worse and worse with tests for benefit becoming more difficult and less relevant to people with HIV. The pace of change also increased as austerity bit. Income Support changed to Employment and Support Allowance and in turn changed to Universal Credit. Disability Living Allowance was replaced with Personal Independence Payments. Claimants just couldn’t keep up and the most vulnerable reacted like ostriches burying their head in the sand unable to accept any more change.

HIV was increasingly promoted as a manageable illness. The strong belief that people with HIV are healthy, with a normal life expectancy, makes people who are unwell with HIV feel misunderstood and isolated just as much as the fear and prejudice they had faced previously.

Quite suddenly last year the health problems I faced and had managed at work became overwhelming. My mental health was increasingly dependent on getting good outcomes for my clients. Some of the decisions to remove benefit from transparently disabled people with HIV were completely unreasonable and fighting these for a year or longer and supporting clients throughout the period became unmanageable.

My eyesight meant I struggled with many routine office tasks and neuropathy in my hands made typing long appeal cases so painful I was unable to hold a knife or fork to cut up food when I went home at night. It was time to say goodbye.

I continue my involvement in HIV, volunteering at Lunch Positive, a voluntary organisation providing a cooked main meal, fostering peer support and providing services that support self care along with access to voluntary and statutory services.

It feels as if my career has travelled a full circle ending where I had began in 1986.