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Northern Ireland health worker: How I was helped back to work as I battled brain tumour

 

Occupational health therapist Judith Gault (31), from Cookstown, was not only battling serious illness, but dealing with worries about her financial situation. Thankfully, Macmillan Cancer Support was able to provide invaluable help, she tells Stephanie Bell.

As she went through treatment for a brain tumour last year, Judith Gault faced a huge worry which she could have done without. Like so many cancer patients, the Cookstown occupational therapist was anxious about how she was going to return to her job with the Northern Trust.

Legally, you cannot drive for two years if you have a high-grade brain tumour and as Judith relied on her car for her community-based job, she was concerned about how she would manage.

Worry about returning to work has become such a big issue with cancer patients that a new service has been launched across Northern Ireland to support patients.

Macmillan Cancer Support has trained a team of people for a new Support Conversation Service, which has just been rolled out to all trusts.

For Judith (31), who was one of the first to benefit during a pilot of the service last year, it has already proved a lifeline.

Thanks to the support of Macmillan, she has been able to work with her employers to overcome the obstacles she faced returning to her job.

She says: “It was a big worry at what was already a very difficult time and also a time when I really needed to be trying not to get stressed about things.

“I couldn’t see how I could go back to my role, which involved driving to clients’ houses and also a one-hour drive to and from home in Cookstown to my base in Coleraine.

“I was also immune-suppressed because I was going through chemotherapy, which meant I couldn’t use public transport or have client contact.

“I needed to get back to work because I was worried about finances and paying my mortgage and I also wanted to get some normality back in my life by being in work again.”

Macmillan was able to signpost Judith to two government-run services she didn’t even know existed — Workable NI and Access to Work (NI).

Both organisations worked with her and her employer to make changes to her role, which were necessary to allow her to return to work.

Workable NI is run by the Department for Communities to offer long-term support to help people with disabilities, who face a lot of barriers to employment, find and keep work.

Access to Work (NI) can help people with disabilities who wish to take up employment, or who are in work and experience difficulty related to their disability.

Judith says: “Both organisations really helped work out a way that I could continue to do my job without a car.

“I found the service offered by Macmillan completely invaluable.

“I didn’t know my rights and it was even good to learn that my employer is legally obliged to make reasonable adjustments to allow me to return to work,” she says.

Judith was able to arrange to travel to work by taxi and her employers offered her a new office-based role in a different centre in Magherafelt, which drastically reduced the distance she had to commute to work.

She managed to return to her job last September and continued to work right through her chemotherapy treatment, which finished before Christmas.

Judith’s diagnosis came out of the blue in March 2017, just as she was about to fulfil her dream of taking a career break and living in Canada for a year.

She had spent three years planning her trip and getting the necessary paper work organised and was due to leave at the end of that month.

However, she had been suffering ongoing headaches since Christmas, but only decided to go to her GP because of her planned trip to Canada.

Nothing prepared her for what was to come.

She says: “I actually felt really silly going to my GP with a headache. I had been going through some changes at work and I blamed the headaches on stress  because you don’t think it could be anything serious,” she says.

“In fact, I honestly don’t believe I would have gone to see my GP if I hadn’t been planning to go to Canada — my dad encouraged me to go because of the long-haul flight.

“It was Valentine’s Day when I went to the GP’s surgery and my doctor prescribed anti-anxiety pills and made an appointment for me to come back a week later. I didn’t have any other symptoms, only the headaches.

“But the anxiety pills didn’t help, so my doctor wanted to refer me to a neurologist.

“I knew the waiting list was really long, so I tried to make a private appointment and could only get one two days before I was due to leave for Canada.”

Just days after seeing her GP, however, Judith woke one morning with such a severe headache that she couldn’t lift her head from her pillow.

On March 6, just two weeks before she was due to leave for Canada, she went to Antrim Hospital, where a scan revealed she had a grade 3 anaplastic astrocytoma, which was a large growth on the frontal lobe of her brain.

She was admitted to hospital and later transferred to the Royal Victoria Hospital in Belfast, undergoing a major 10-hour operation just a week later.

“I think it was more of a shock for my mum, who was with me when doctors told me what was wrong,” she recalls. “Mum just broke down, but I was numb. I don’t think at that point I really took it in fully.

“They wanted to keep me in to do an MRI to confirm it and when the results of that came through, it became real to me.”

Surgery followed within a few days, when 90% of the tumour was successfully removed. At the time, she should have been packing for her trip to Canada, but instead she was recovering from her operation and preparing to start six weeks of radiotherapy.

She then faced six chemotherapy sessions, but only completed three as her blood count was too low to continue the treatment.

Just over a year on, Judith has recovered and is doing well.

She says: “It has been a complete whirlwind of ups and downs.

“The biggest frustration for me was losing my driving licence and worrying about getting back to work.

“I used to be so active and so able and not being able to drive and having to rely on friends and family was the hardest thing.

“But now, I am feeling back to normal again. An illness like this changes your perspective on life and while I was really looking forward to taking a year out in Canada, I am now happy to make the best of what I have here.”

How the Macmillan service works

The Macmillan Work Support Conversation service was designed and piloted across Northern Ireland from June of last year.

The pilot ended in December 2017, and following evaluation in January 2018, has now been embedded as part of the Macmillan information and support managers’ range of tools to support people living with cancer in all of the Health Trusts.

Karen Kelly (below) runs the service in the South Eastern Trust, working as a Macmillan information and support manager, based at the Ulster Hospital.

As well as helping patients, the new service provides support and information to employers who may need direction on what they can do to accommodate an employee returning after cancer treatment.

Also, people who are self-employed can get advice on what support is available to them.

Karen says:  “What we found was that issues about work were coming up more and more with patients. People were trying to absorb a diagnosis and understand what it would mean for them and their families and also having to make decisions about work without really knowing what their options were.

“We found most people were ill equipped to deal with it and didn’t know enough about their rights. We make sure that people have the right information, so that they can make informed decisions. 

“Sometimes that means exploring what support is already available or considering what a reasonable adjustment might be for them in their workplace.”

As well as practical issues on returning to work, the service helps people to find emotional support, manage fatigue or will refer patients on to more specialised services if necessary.

Karen adds: “It may just be helping people to find the right words to speak to their employers, so that they can clearly communicate their needs. It is all about relieving people of another stress at a difficult time in their life and maybe help them to find options they may not have thought about before.”

Macmillan Work Support Conversation Service is available with the Macmillan information and support manager in local Trusts, either in person or by telephone for anyone unable to travel. People can self-refer, or be referred to the service by a health professional.

To contact your local Macmillan information and support manager for a Work Support Conversation, visit the ‘In Your Area’ section of www.macmillan.org.uk or call the Macmillan Support Line, tel: 0808 808 0000 (lines are open Monday to Friday 9am-8pm).

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