Living with terminal illness

A RANDALSTOWN woman who is living with a terminal disease has warned that lack of vital funding is leaving patients to face an uncertain future without hope.

Retired civil servant Pauline Millar has Idiopathic Pulmonary Fibrosis, a condition that scars the lungs leaving patients fighting for breath,

Sadly the condition is terminal, with most people only living three years after their diagnosis.

Pauline is now in year four - and she has issued a heartfelt plea for urgent action to help IPF sufferers get the care they need.

The condition has cast a shadow over her life for decades. Indeed, it is 28 years since a member of her family was first diagnosed.

Pauline knows all too well how this story may end, but she has strived to cast light on a disease that seldom makes the headlines - even though there are 1,200 people in the province battling its advance.

“Living with IPF has shown me just how little awareness there is of the condition,” the local woman said this week.

“Here in Northern Ireland, we have no tailored or structured care pathways available to patients and their carers, leaving many of us to form our own support group here to help support each other.

“I think the most striking thing about IPF is that in nearly 30 years there has been no breakthrough in treatment, other than a few medications that slow its progression.

“However, even these treatments are inaccessible for people until their condition deteriorates further.

“Imagine if we hadn’t made huge progress in cancer treatments, or that those living with cancer were told they had to get worse before they could get help. There would, rightly, be huge outcry.

“Sadly, this the situation facing those living with IPF – living day-to-day with no hope of a cure.

“It’s all well and good to talk about bring services back up to pre-COVID levels, but for people like me living with IPF that is not good enough.

“Staff, patients, and carers deserve a properly structured and funded respiratory support service here in Northern Ireland.”

And, at last, it seems that this heartfelt plea is finally being heard.

At a meeting of the All Party Group on Lung Health at Stormont last week, MLAs had a short enquiry into IPF.

They heard that, at present, there is no known cure, although new anti-fibrotic medication can slow the development of greater lung scarring, with a lung transplant being the only long-term treatment.

However, there is often a long waiting list and people in Northern Ireland must travel to England to get the procedure - and obviously this proves challenging for many due to the nature of their condition.

Assembly reps heard from patients, charities, and health care professional about services in Northern Ireland.

Back in 2018 discussions were held about overhauling the support for those with IPF, however nothing came of these and access to specialist services is still reliant upon individual Health and Social Care Trusts being able to find new funding to provide them.

Now the All Party Group on Lung Health, supported by Asthma UK and the British Lung Foundation Northern Ireland, are working to try and change things for the better.

They are calling for the Department of Health to make access to anti-fibrotic medication easier and a new Lung Health Strategy to ensure ‘a joint-up approach’ is taken.

Joseph Carter, Head of Asthma UK and the British Lung Foundation Northern Ireland, said enough time had already been wasted.

“A diagnosis of IPF is devastating with people feeling helpless due to the lack of treatment and support,” he said.

“Most people will only survive three years after diagnosis and yet it is often a battle to access the limited treatments that are available and palliative care towards the end of life.

“We want everyone with this condition to be able to access a specialist respiratory nurse and a consultant, so they can get the best possible care.

“At the moment people’s ability to access services is patchy and varies between Health and Social Care Trusts, but nowhere has the multi-disciplinary team that patients need and could access if they lived in Britain.

“We need a new Lung Health strategy so services for IPF and other lung conditions can be redesigned, and people get access to the right treatment at the right time no matter where they live.

“We are calling on NICE and the Department of Health to review the criteria that is used to restrict anti-fibrotic medicines.

“We have medicines that can slow progression and improve quality of life, but patients have to deteriorate to a certain point before they can be prescribed.

“We wouldn’t accept this in cancer, so it shouldn’t be acceptable with IPF.”

Pam Cameron MLA, chair of the All Party Group on Lung Health, has pledged to take urgent action.

“When I first heard about the severity of this condition, I was shocked,” said the South Antrim rep.

“IPF has such a huge impact on the lives of those living with it – yet it does not get the attention of other conditions such as cancer.

“IPF is a terminal disease, and we must treat it as such.

“The Assembly and Department for Health can and must do so much more to support those living with the condition and ensure they can access the first-class support they deserve.

“I will be working with other MLAs on a cross-party basis to bring forward a joint resolution on this issue and hope MLAs from all parties will join us to get those living with IPF the help they need and deserve.”

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