NRAS member speaks at an NRAS event

to raise awareness of working with RA

Good afternoon ladies and gentlemen. My name is Georgina Dale, I am 33 years old and I live in Pickering North Yorkshire. I was diagnosed with Rheumatoid Arthritis nearly 20 years ago, whilst in my early teens. It immediately affected me having to take considerable time off school and cope with the changes I had to make to my daily life. With support from school I was able to get 9 GCSE’s and I continued into further education and gained a BTEC National Diploma in Business and Finance.

I have always been upfront and honest at job interviews explaining how RA affects me and its potential consequences with time off due to flare ups and hospital appointments.

Since that time I have been working at least 30 hours a week, but in July this year I was forced to stop working as I deteriorated to a point where I could no longer continue, both physically and mentally. This was because my current R.A medication was not working effectively.

Although my rheumatology consultant wanted me to have another course of biological anti TNF treatment, as they had worked effectively in the past, it was refused by the York PCT Trust, due to a lack of funding. It then went to appeal and was yet again denied, so I had to make the difficult decision of stopping working.

Most of my employment has been in the private sector where I have encountered both positive and negative experiences. Due to the nature of R.A, flare ups are not always predictable and various surgical procedures meant I was often away from work sick.

A negative example I am going to use is from my second to last job where I was an internal sales executive for a large printing company. The first occasion I had to take time off due to my R.A, a meeting was held immediately afterwards and subsequently onwards after other periods of absences.

Each time these meetings occurred, I always got upset or angry with my employers attitude and comments made about me.

This only served to put me under even more pressure to get into work, even when I was really poorly to avoid this situation re-occurring. I often went into work whilst in severe pain, but the negative approach from my employer only made the situation worse.

I tried to make them more aware of the nature of the condition, supplying them with literature about R.A and its impact in the work environment and also gave them permission to contact my doctor for any further information they required.

I was then told by my employer that my colleagues were starting to resent the time off that I was having and that it was having a negative effect on the company. When I suggested alternatives such as reducing my hours or swapping jobs I was told it would be considered, but no action was ever taken. I was even told by the managing director of the company that I would never move from my current job because of my illness and was taken off salaried pay and forced to work pro rata.

This began to me financially, so to avoid losing even more money I had to use most of my paid holidays as time off sick, so therefore never got any proper holiday time.

This began to have an impact on my mental health and I started to become depressed. As R.A is not always outwardly visible to others, colleagues used to make jokes such as ‘oh you are here this week then’ and comments of a similar nature. Because of that I worked much harder to compensate for the time off that I had incurred, but this was never recognised or appreciated by the management.

Of course some colleagues were supportive and understanding and helped out whenever I asked but I always felt that I was treated differently.

Apart from statutory increases I was also refused any additional pay increases and any chance of advancement to a better paid position was always refused. Although I was unable to prove that any employment laws were ever broken, it was made very difficult for me being under constant scrutiny and pressure from the management.

Having to deal with extra stress and pressure like this only served to make the situation worse and I relapsed into a severe state of depression and had to have yet more time off.

I returned to work and the same situation continued. Then in September last year one of my customers, with whom I had developed a good relationship asked if I would like to work for them as an Administration Manager.

This felt really good, that someone who was aware of my R.A was still prepared to give me a chance. It was a lot smaller, friendlier company and I began working for them in October 2006.

The difference I felt was enormous. I wasn’t just ‘Georgina with arthritis’ anymore. My skills and experience were recognised and for the first time I felt like part of a team. They were very flexible with my working hours, such as coming in slightly later due to stiffness in the mornings and making up time for hospital appointments, without being financially penalised.

I was also given a new ergonomic chair, foot rest and was never given any tasks that were too physically demanding. I was also occasionally able to work from home when I wasn’t well enough to get into the office.

But unfortunately this was not to last as I became too ill to work, as I was still not on a treatment that gave me the stability I required to work effectively. As York PCT Trust had yet again refused another appeal by my consultant for anti TNF treatment.

My employer was keen for me to stay on and I was offered reduced hours, but I once again became quite depressed and made the difficult decision to stop working for the time being as I did not feel I could offer them the level of reliability that they needed.

This compassion and understanding is very rare and more employers need to be made aware of the nature of R.A and offer options that suit both the company and the employee.

Being a member of the NRAS I contacted Ailsa to ask for her help about getting a new TNF treatment. Ailsa wrote a fantastic letter supporting my case. With other letters from my G.P, Consultant, friends and family I was finally prescribed Humira at the beginning this month.

Although presently I am still not able to work I am in contact with a Disability Careers Advisor who is giving me the support with making new contacts and I am looking to retrain to go into education or social work in the near future.

Without the advice, help and support of the NRAS I would have felt very isolated as this organisation has a great knowledge of rights and other issues that we are not always made aware of by Government Agencies. I am also member of the Volunteer Network for the NRAS, offering support and advice to others. Doing this presentation today has been difficult for me but this is an important issue that I believe the Government needs to address to help more people with R.A remain in the workplace.

People with R.A do not want to be labelled, just given a chance to work without being discriminated against.

Thank you for your time.