Belfast Telegraph

Friday 25 April 2014

Living with asthma

Research reveals more than half of asthma sufferers here don't receive the best care. Stephanie Bell finds out how the condition has impacted on two families

So isolated: Rachel MacMillan's severe asthma left her unable to attend school for years

As many as seven out of 10 people with asthma in Northern Ireland are not getting the right standard of care, a disturbing new report reveals.

This translates to 127,000 people in the province missing out on basic elements of care that could prevent them from having a serious asthma attack.

According to the charity Asthma UK, which conducted the Compare Your Care research during the summer months:

Only three in 10 people said they are receiving care that fully meets Northern Ireland's asthma standards.

40% said they had been given an action plan from their doctor or asthma nurse, so they know what steps to take when their symptoms get worse.

One in four asthma patients said that no healthcare professional had ensured they knew how to use their inhaler.

One in four said they did not have a review of their asthma every year with their doctor or asthma nurse.

Joan O'Hagan, director of Asthma UK Northern Ireland, says: "Poor care puts people at increased risk of serious asthma attacks.

"Standards have been in place in Northern Ireland for three years now, giving healthcare professionals the information and advice they need to prevent asthma attacks and save lives.

"But worryingly, people with asthma have told us that key aspects of these are being routinely neglected." Every year in Northern Ireland, more than 1,400 people are hospitalised because of a serious asthma attack, yet the charity says that three-quarters of hospital admissions could be prevented with the right care and management.

We talk to two local women, who reveal just how frightening it is to live with asthma. One is a woman who has struggled from shortly after birth with severe asthma. The other is a mum whose seven-year-old girl's condition is finally under control.

'I've no friends because asthma left me too ill to go to school'

Rachel MacMillan (21), from Lisburn, has had her entire life overshadowed by severe asthma. For years she has been virtually housebound – only leaving her home on very rare occasions – and lives in constant fear of an asthma attack.

Her life has been so cruelly restricted by the condition that she was unable to attend school and had to be home-tutored.

Rachel's asthma was so acute that at one stage she had to have her medication pumped directly into her via a line in her stomach, which she wore for three years in her teens.

At the time, she was only one of five people in the province whose condition was so chronic that it required this form of treatment.

Constant use of steroids over the years to control her frightening and frequent asthma attacks has now tragically caused osteoporosis – another serious condition which leads to weakening of the bones, leaving them vulnerable to breaking.

It means that Rachel can no longer take steroids – which is the main medication for controlling attacks – and doctors are currently trying to find alternative treatments for her.

Her dad Brian has arranged his job so that he can work in the evenings and weekends, allowing him to be with Rachel during the day.

It is only in the past two years that this brave young Lisburn woman has been able to come to terms with her isolation by throwing herself in to fundraising for Asthma Northern Ireland.

She says: "I was diagnosed with asthma when I was a year old. From P3 until fifth year in secondary school I couldn't go to school and had to be home tutored because of the risk of infection.

"That was tough, especially as my three sisters and brothers would be going out in the mornings and I wasn't.

"I never got my GCSEs because of my asthma and I've been told I can't work because of the risk of infection.

"I have no friends because I wasn't at school and it is hard sometimes, seeing my sisters go out, but I have learnt to live with it.

"For years I would have taken an asthma attack once a week. They are not as frequent now but I do now struggle more at nights with coughing and difficulty breathing.

"Attacks are very frightening. You just feel your chest tightening and you are fighting to get every breath."

Rachel's own care was never an issue until she became too old to be treated at the Royal Belfast Hospital for Sick Children.

She had hoped to be transferred to the specialist asthma clinic at the Belfast City Hospital but had to battle for three years to get a referral, during which time her asthma was not fully under control, although she says the treatment at the City Hospital since has been "amazing".

"You do constantly live in fear of an attack," she says.

"Asthma NI has been a great support and two years ago I was able to do a bag-pack in a local supermarket with my family and raised £560 for the charity.

"This year I was determined to do the Lisburn Fun Run, although because of my asthma my family didn't want me to do it.

"I was in the hospital high dependency unit the week before, after having an operation on my nose to try and help my asthma.

"I ran two-and-a-half miles in 28 minutes and raised £300. We are now trying to think of a big fundraiser to do next year and that has given me a focus and something to aim for."

Rachel adds: "I used to sit and think about the things I couldn't do, but now I just accept it and try and get on with life the best I can."

'I used to sit with my little daughter for hours in a steam-filled bathroom'

Michelle Laverty from Lisburn knew shortly after her seven-year-old daughter Poppy was born that all was not well.

She lost count of the number of times over the next three years that she sought medical advice for her daughter only to be told that she had picked up a bad cough or winter infection.

Poppy was three before Michelle's worst fears were confirmed and she was diagnosed with asthma.

Now the Lisburn classroom assistant, who also has an 18-year-old daughter Hayley, has taken an active role in campaigning for improved care for asthma sufferers in Northern Ireland.

She has joined forces with Asthma NI and has lobbied Stormont on a number of issues including:

* Proper resourcing of the asthma standards in the Service Framework for Respiratory Health and Wellbeing;

* Support for the introduction of emergency inhalers in schools and better informed teachers;

* The benefits of pharmacists now carrying out Medicine Use Reviews for people with asthma.

Michelle (38) who is married to Stephen (40), an electrician, feels that medical staff need to have a better understanding of all the forms and levels of asthma, and that often asthma isn't taken seriously enough.

She says: "It was very, very worrying up to the point when she was finally diagnosed.

"I felt as if I was in my GP surgery all the time. As a parent you trust your own instinct and I just knew something wasn't right.

"I'm quite a strong character and I kept persisting.

"When Poppy wasn't well it really interfered with her sleep at night and it could last for weeks and as parents we were exhausted.

"I used to sit with her for hours in a steam-filled bathroom just to help give her some relief.

"I remember one day bursting into tears in my GP surgery and that's when he told me he thought Poppy had asthma. She was given an inhaler and referred to the asthma clinic," she says.

It took some time to find the right medication to control Poppy's coughing and breathing.

Michelle was relieved to find fantastic support in the asthma nurse her daughter was referred to in Lisburn Health Clinic.

For the first time she was given all the information she needed to understand her daughter's symptoms and she contacted Asthma NI which was a huge support.

She says: "Just simple things like being told to take the carpet out of her bedroom or constantly Hoover it – things like that which we didn't know made a big difference."

She decided to become an active campaigner for better asthma care after a particularly traumatic incident two years ago. She had to rush Poppy to hospital after she took a bad asthma attack.

Michelle was stunned to be told by the doctor who examined her daughter that she did not have asthma.

She explains: "The doctor told us that she had flared tonsils and she advised that we give her cough medicine and that her inhalers were doing her no good. Poppy was very ill that night and this really added to our distress.

"Since then if Poppy has a serious attack I take her to the Royal Belfast Hospital for Sick children where they know all about asthma.

"There should be a better understanding among all health professionals.

"This is why I became the patient's representative on the Asthma NI Advisory Panel and joined them in lobbying Stormont."

Thankfully Poppy's asthma is well under control but Michelle is determined to keep campaigning for better care.

Where to get help

In Northern Ireland 182,000 people (one in 10) are currently receiving treatment for asthma. This includes 36,000 children and 146,000 adults.

There were 33 deaths from asthma in Northern Ireland in 2011.

The Asthma UK Advice line offers independent advice about asthma for anyone who would like to talk confidentially to a specialist asthma nurse. It is open weekdays from 9am to 5pm tel: 0800 121 62 44.

For more information about asthma go to www.asthma.org.uk.

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