Campaigning for change in Northern Ireland

On Monday 16th June and Tuesday 17th June, I visited Parliament Buildings, Stormont, in Belfast, the home of the Northern Ireland Legislative Assembly. Since devolution, health services in Northern Ireland are decided upon by the Northern Ireland Legislative Assembly which is made up of 108 Members known as MLAs.

Meetings were held at Stormont with the Northern Ireland Health Minister, Edwin Poots, various MLAs, MPs and Public Health officials.

I was invited over to Northern Ireland by Kerry Irvine who lost her own husband Noel to pancreatic cancer in 2011 (read Kerry’s story here) to meet her local MLA Tom Buchanan. Tom has been very supportive of Kerry’s drive to raise awareness of pancreatic cancer and to improve early diagnosis by asking some key questions in the Assembly over recent months. We were also joined by Gráinne O’Neill – who lost her mum to pancreatic cancer and who has become a fantastic advocate for pancreatic cancer awareness. David Park representing PCUK also attended.

Not only did we meet Tom, but Cathal Mallaghan, MLA helped set up a meeting with Maeve McLaughlin, MLA who is the Chair of the Committee for Health, Social Services and Public safety and Mickey Brady, MLA jopined us too. Following that meeting, we met with MP Michelle Gildernew – the constituency MP for our supporter, Eric Johnston (Eric lost his partner to pancreatic cancer), who also joined us.

Later on Monday afternoon, we had a meeting with Edwin Poots, the Minister for Health, Social Services and Safety.

The discussions were frank and open and based around the following:

I stressed the need for earlier diagnosis of pancreatic cancer and alerted them to the fact that Pancreatic Cancer Action has developed a FREE, CPD credited e-learning tool for GPs to help them diagnose pancreatic cancer sooner. Stressing the need for greater GP education I asked if the committee/Minister would look to help promote this free tool in Northern Ireland. The Minister has agreed to talk to the Royal College of GPs Northern Ireland to look at additional ways we can promote the tool.

Having done a lot of background research before my trip, I had identified a pancreatic cancer audit which was carried out in 2007. I stressed there was a need for an update to the audit as the current one (now 7 years old) is showing that:

• Nearly 2/3 of patients are not seen by a Multi-Disciplinary Team (MDT) after a diagnosis
• 52% of patients are diagnosed in A&E
• Only 8% of patients were eligible for potentially curative surgery
• Only half of patients were referred to oncology and of those only 1/2 were treated with chemotherapy.
• Only 1% of patients were treated as part of a clinical trial
• Only 18% saw a pancreatic cancer specialist nurse
• Over 2/3 were not referred to a palliative specialist.

It is interesting to report that some of those we met were either unaware of the existence of the audit or its contents or both.

I also stressed the need for a pancreatic cancer awareness campaign in Northern Ireland. Both Maeve McLaughlin, MLA and Mr Edwin Poots, (Health Minister) suggested that we speak to the Public Health Agency (PHA) as they are responsible for targeted GP awareness. Mr Tom Buchanan, MLA was extremely helpful in arranging a meeting for myself and Kerry Irvine with Dr Miriam McCarthy and Mr Stephen Wilson from the PHA the following day, which I was very happy to stay on for. Mr Poots was complimentary about our recent “I Wish I Had…” advertising campaign adding that while some found it controversial, it  however ‘did the trick’ in raising awareness of pancreatic cancer among the public.

Another area we brought up was access to drugs. In England there is the Cancer Drugs Fund which can allow patients access to drugs awaiting approval from NICE. Currently no such fund exists in Northern Ireland and Mr Poots suggested that there was a move to raise money through the reintroduction of prescription charges in Northern Ireland to fund a similar scheme. This though is yet to be agreed and could face oppositions from some MLAs.

The lack of Cancer Nurse specialists for pancreatic cancer patients was also discussed. Currently there is only one specialist nurse in the whole of Northern Ireland. We hope this will be improved after Mr Poots has referred this up to the Chief Nursing Officer.

Another area we highlighted was the lack of pancreatic cancer specific written information given to patients. We pointed out that the charities produce this free of charge but that some hospital units are reluctant to give it out. Pancreatic Cancer Action’s series of patient information booklets can be ordered here 

While the others returned home, Kerry and I went back to Stormont the next day to meet with Dr Miriam McCarthy and Mr Stephen Wilson from the Public Health Agency. It was a good discussion which has led to us being invited to join in with a stakeholder meeting for the new Northern Ireland cancer awareness campaign in September. We will also be getting involved with helping to set priorities for the campaign, looking at the rationale for prioritising tumour groups, and how we can get the messages out for the less common cancers. Concerned that a generic campaign (covering all cancer types) would be too broad to help pancreatic cancer early diagnosis, we floated our idea that if they were unable to fund a pancreatic cancer specific campaign, we should look to grouping tumours in the upper gastro-intestinal tract and having an awareness campaign based around symptoms for those cancers.

We have plenty more discussions to be had in the autumn which is all very positive!

What Tom Buchanan has also helped us with is to arrange for an awareness event to coincide with Pancreatic Cancer Awareness Month in Stormont on 24th November in the Long Gallery. More details will follow soon. Also, Kerry Irvine and myself have been invited back to the All Party Group on Cancer (we attended their meeting on Tuesday afternoon) to give a full presentation on pancreatic cancer on 25th November. We are also in discussion with the Stormont Estate to get permission to hold our Striding for Survival charity walk in the grounds on Saturday 29th November (this is in addition to the walk planned for Virginia Water, Surrey on 1st November!) – so watch this space!

I would like to thank Kerry Irvine, Gráinne O’Neill and Eric Johnston who have all helped get these important meetings with their MLAs and MPs and start the process of affecting change for pancreatic cancer in Northern Ireland. A big thank you to all the MLAs, MPs and public health officials we met over the course of Monday and Tuesday. A big thank you goes to Mr Tom Buchanan, MLA for helping us to arrange these very fruitful meetings.Thanks guys!

Ali Stunt

Founder & CEO, Pancreatic Cancer Action