Artist Nicola Russell has breast cancer... so why is she now being forced to move to England for treatment?
The highly-acclaimed painter who numbers the Queen among her clients tells Stephanie Bell why she's backing Cancer Focus NI's campaign to end the 'postcode lottery' over revolutionary drugs.
An acclaimed Belfast artist who is living with a secondary cancer diagnosis has starkly brought home the terrible human cost to patients in Northern Ireland who are denied access to specialist treatment through the Cancer Drugs Fund.
Nicola Russell is seriously ill and her best hope for treatment to prolong her life lies in one of the 38 drugs only available through the fund.
But, because she lives in Northern Ireland, doctors here cannot prescribe the treatment.
Nicola's only option – one which she is reluctantly having to consider as she copes with her illness – is to take the drastic step of leaving her home, family and friends behind and move to England.
Nicola has been moved to highlight her own story by the courage of the many other cancer patients who have spoken out in recent days in support of a campaign by Cancer Focus NI to force the Government to make all drugs available to cancer patients here as they are in the rest of the UK.
Nicola says: "It is a crazy situation. I've been reading about other people in articles in the Belfast Telegraph and when I read their stories my heart broke for them. I just think what is happening is inhuman.
"It has made me more aware of my own situation. Their courage in speaking out has given me the courage to talk about something which is very personal and which you wouldn't normally speak publicly about.
"I just feel I can't sit back and not lend my own voice to the campaign. I'm horrified at the situation and I don't know how any political party who stands for social justice is not hanging their heads in shame at the situation here. It is unspeakably wrong."
Prime Minister David Cameron announced earlier this year that money would be made available to allow the £200m-a-year fund for life-enhancing cancer drugs to continue until 2016.
However, these drugs – which in most cases are life-prolonging – are available only to people in England, Scotland and Wales. Currently, there is no provision to give patients in Northern Ireland access to them.
Last week, Cancer Focus NI launched the Equal Access campaign to persuade the government to act now to end the unfair postcode lottery for cancer patients.
It has been suggested that bringing in a £3 prescription charge could support a £3m cancer drug fund for Northern Ireland.
In the meantime, cancer patients who are dying are being told they cannot get drugs that could prolong their lives which they could have if they lived elsewhere in the UK.
Nicola (50), who lives with her long-term partner, Kenny Boyd (46), in Belfast, is a highly-acclaimed artist specialising in equine and floral artworks.
Her paintings are in private and public collections around the world, including those of the Queen, former US president Bill Clinton and Irish president Michael D Higgins.
She was famously commissioned to paint a portrait of Clinton to commemorate his visit to Belfast in 1995 and was also invited to present the Queen with a painting called Wild Irish Colt.
Nicola was diagnosed with breast cancer in 2007, but after treatment she recovered and, in February 2013, she was relieved to be taken off her Tamoxifen treatment after five years.
Her elation, however, at being given the all-clear was short lived when, in April 2013, she started to suffer pain in her leg. After a series of tests, it was July when she was finally told that she now had secondary cancer which had spread to her leg and her lungs.
Nicola says: "I was happy to be off the Tamoxifen, but I never took anything for granted. You think differently when you have cancer, you see life differently and I would never have said I was cured, but at the same time I never expected it to return. I was shocked at the news."
The prognosis was not good. Nicola underwent surgery to remove the cancer in her leg and was given a hormone treatment, but told her cancer was incurable.
She feels strongly that, instead of being told they are terminally ill, cancer patients should be informed about other treatments available around the world which are known to have a huge impact on many people with secondary cancer.
She says: "To me, the power of that prognosis is just down to a doctor basing it on average statistics from the medical care you can get in Northern Ireland.
"I have read a huge amount about cancer and living with secondary cancer and there is global community out there challenging social and medical attitudes to secondary cancer.
"My partner, Kenny, has also been hugely active in that area. Great things are being done for patients, especially in Germany, and people should be informed about that, not just told they have X amount of months to live.
"People have been known to live for years after being told their cancer is incurable. In the worst case scenario, I should not be alive now.
"I think it is very, very important that people take control of their own cancer treatment themselves. I don't think it should be down to one doctor to tell someone they are going to die. In a way, it can become a self-fulfilling prophesy – and it shouldn't be.
"The language and attitude of society and the NHS and how we deal with it are massive and it's something I challenge constantly."
Nicola sought a second opinion through a private appointment with a leading oncologist in London.
She twice attended Professor Stephen Johnston, a breast cancer specialist based at the Royal Marsden Hospital.
He recommended Everolimus, a new drug which is prolonging the lives of breast cancer patients with secondary cancer, but which is only available through the Cancer Drugs Fund.
Nicola had to pay almost £1,500 for the consultations only to be told that the drug is not available in Northern Ireland.
"It's shattering to be told that there is a treatment that will help you and prolong your life, but you can't have it," she says.
"In many ways it is typical of Northern Ireland in the sense that we can get fired up about things like flags, which I know are important to some people, and then ignore things that have huge significance and just brush them under the carpet.
"The message there from politicians to cancer patients is that you are just not worth it. That's how it makes you feel. Unfortunately, that's what they are doing. The only way I can get the treatment is to move to England.
"We don't have parity of esteem with every other citizen in the UK. You cannot live in a democracy and not be treated like equal citizens, yet we are."
Nicola has given serious consideration to moving to England. Never mind the fact that she doesn't want to leave her home and family and her work in Belfast – she feels she has no other choice. But the emotional upheaval and the financial burdens are immense.
She says: "It's impossible to even get your head around. We are looking at how much it would cost to get a room in London as property is so expensive.
"We've even thought about renting in Manchester and travelling to London, which would be tough. It also means my partner leaving his business in Northern Ireland and he is self-employed.
"It's a complete upheaval and it means you have to do the unfathomable when you are in an already difficult situation, where you are dealing with being seriously ill.
"To be forced to consider living in a place you don't want to be in, to sustain your life and then to have the energy and the ability to finance is just a nightmare."
Nicola has spent most of the last 10 months coming to terms with her diagnosis. It was only last weekend that she found the strength to begin to paint again and has started a new floral collection.
Last year just before her diagnosis, she had spent three months in Paris working on a new collection painted in Monet's garden. She now plans to launch that collection along with a new-look website in the next couple of months.
She says: "When you are told you have secondary cancer, you suddenly find yourself living in this world of death and dying and it's hard to accept the reality of your situation.
"Ironically, at the moment I feel great, even though I am very ill. I have a great diet and I am very focused on my mental, physical and spiritual well-being.
"I'm looking at alternative treatments, too. You need hope and encouragement to try things and to keep trying things and to me that can only be a good thing.
"Not only was I not offered this drug, which I have been told could help me, but I wasn't even told about it.
"There are a lot of people who aren't aware of other drugs that are life-extending and that's the sad part of being given a prognosis.
"I think it's vital that people be told and are made aware of the fact that there is other treatments available and there is hope.
"The situation with the Cancer Drugs Fund has incensed me; people shouldn't have to deal with that.
"I'm back painting again. I think when you give up, you stop living. I wanted to begin working again and reintroduce those great reasons for living and not feel like I'm dying of cancer."
How the Cancer Drugs Fund works
- The Cancer Drugs Fund consists of money the Government has set aside to pay for cancer medication that hasn't been approved yet by the National Institute for Health and Care Excellence (Nice) and isn't available within the health service. This may be because the drugs haven't been examined yet, or because Nice has said they are not cost-effective.
- Because of the amount of evidence that needs to be examined, it can take six months for Nice to carry out a preliminary assessment of the clinical and cost-effectiveness of a new drug.
- This means that there can be benefits to bringing forward a new drug before Nice has assessed it, or when there is an exceptional case, which is allowed for through the Cancer Drugs Fund.
- The aim of the fund is to make it easier for people to get as extensive treatment as possible and a total of 42,000 people have so far benefited from the fund in England.
- But the Cancer Drugs Fund is only for people who live in England. The devolved assemblies in Scotland and Wales have now created their own, similar funds. Northern Ireland is the only country in the UK which so far hasn't decided to have a similar programme.
- Health Minister Edwin Poots has said that a £25 per year "capped" prescription charge could pay for the fund here. It has also been suggested that a £3 prescription charge could support a £3m cancer drug fund in Northern Ireland.
- Other politicians have suggested that the money could already be available in Northern Ireland through an agreement known as the Pharmaceutical Price Regulation Scheme (PPRS). The PPRS controls the prices of branded drugs sold to the health service. Around £2.8m was returned through the scheme in the last financial year.
- A review on how patients can access specialist cancer drugs is to be completed by the autumn. But research has already shown that 278 patients a year would benefit from the fund in Northern Ireland, at a cost to government of £5.7m (or £3.20 a year per person in the province).
- Evidence has shown that patients in England who were given just months to live in 2010 are still alive today thanks to having access to these drugs.