By Catherine Moonan
Monday February 14 2011
The Irish Heart Foundation (IHF) estimates that there are, on average, 10,000 strokes a year. My dad was one of those statistics in 2010. According to the IHF, a quarter of all stroke victims die. My dad was given four hours to live on entering Beaumont Hospital, Dublin, on June 5 last. All his organs shut down.
Thankfully, due to the exceptional care, compassion and kindness that he received from all the staff, he has made amazing progress to date.
There are currently 30,000 people in Ireland living with a disability as a result of a stroke. Prior to his, my dad (71) had been living independently with my mother in their own home. As a result of his stroke we were told that he would need 24-hour nursing care for the rest of his shortened life.
My dad was also one of the statistics on the delayed discharge list at Beaumont, highlighted in the media over Christmas as one of the reasons for the number of patients on trolleys in A&E. 'Bed blockers' is another unhelpful term used to describe this group of patients.
As a family, we know what that is like too. In a previous incident in 2008, my dad had to sit in Beaumont's A&E for 17 hours before seeing a doctor, and then waited for two days on a trolley before getting a bed. So I've witnessed both sides of the hospital bed problem.
Due to the nature of his illness, my dad was approved for the Fair Deal Nursing Homes Support Scheme, which provides financial support for long-term nursing-home care. The average cost of a nursing home is €1,200 per week.
We found the Fair Deal information booklet quite difficult to comprehend, and once we'd deciphered it the next hurdle was a complex application process. Yet according to the HSE, there have been no complaints in this regard.
Unfortunately, the Fair Deal does not support nursing care in the home, which would have been our preference. On average, 24-hour nursing care in the home costs €1,400 per week but my mother is not in a financial position to pay that.
The next step was to start looking for suitable homes nearby or on a bus route, as my mother doesn't drive. We wanted to be able to keep up our daily visits to my dad, which, we believed, had been vital to his recovery.
There was one home that we felt was suitable, but my dad would be number 75 on the waiting list. Another nursing home wouldn't even consider him as he was a dialysis patient, and another because he was able to walk. "Come back to us if he deteriorates," we were told. He would have been at risk because of the stairs.
It seemed crazy that we had spent months trying to get him to walk again, and now he was being denied a place in a nursing home because he wasn't confined to a bed.
Once we'd made our selection of suitable homes all we could do was sit and wait. And wait. According to the HSE, the process of getting a nursing home place is very transparent and is operated strictly on a first come/first served basis.
I'm glad to report that my father finally got a place a few weeks ago in a suitable nursing home nearby, but it has taken four months.
We had previously been offered places in two other nursing homes, which we refused. One was 16km away and the other was 27km away. Why should my mother, with her own medical difficulties, have to endure four buses a day to visit her husband, when there was a nursing home within walking distance of their home?
We also wanted somewhere within a relatively short distance of the hospital, as my dad would have to return there for dialysis three times a week.
Even though we had good reasons for rejecting the first two nursing homes we were offered, pressure was put on us to get my father out of hospital and into any nursing home as soon as possible. Not only was he running the risk of getting a hospital-acquired infection, there was also the threat that we'd be charged if we didn't move him.
John Stanley, spokesperson for Beaumont Hospital, says that at the peak in 2009, close to 150 acute beds were "inappropriately occupied by patients whose discharge had been delayed".
"Beaumont has experienced a persistent difficulty," says Mr Stanley, "in persuading some patients who are fit for discharge (and/or their relatives) that refusal to vacate an acute bed they no longer require in order to wait for a bed in the nursing home of their choice is grossly unfair."
I appreciate where Mr Stanley is coming from. Believe me, we did not want my dad to be in the hospital this length of time, but we were left with no real choice.
However, the health service can't and shouldn't expect families to send their loved ones just anywhere. Surely, if a suitable nursing home of choice is unavailable, the system should consider extending the Fair Deal to support 24-hour nursing care in the home, even if it's only while waiting for a nursing home?
Ken Shannon is a director with Bluebird Care, which provides care for the elderly in their own home. "People who stay in their own home are able to maintain a level of freedom and dignity that is not possible in residential care," he says.
"They will be close to the things they love which could include pets. They will not have restricted visiting hours and studies have shown that people who remain at home tend to live longer and are happier."
According to Fine Gael health spokesman Dr James Reilly, no part of the health service stands alone.
"The nursing home system should be a self-selection process. As far as possible, the patient should be kept as near to the family and community as possible. In order to reduce the number of people in hospitals and nursing homes," he says, "we need to have more emphasis on chronic illness care, including where people have quarterly check-ups and prevention in the community.
"We have a national car test," adds Dr Reilly, "but not a national body test. I believe that people are more important than cars."
Dr Reilly feels there should be more nursing homes with facilities such as physiotherapy, occupational therapy, and speech and language therapy to allow people continue their recovery after they have left hospital.
"We are doing patients a disservice by keeping them in acute hospitals for prolonged periods and ultimately committing them to long-term institutional care," he says.
According to the HSE, if patients select a particular nursing home without a vacancy, they become liable to the in-patient charge in hospitals.
A letter addressed to my mother and signed by Beaumont Hospital's CEO, said that the hospital would be required to charge us €1,296 a week if she didn't accept the (underlined and in bold) next available nursing home which could manage my father's care needs.
I was so relieved that I opened the letter and she never got to see it. That day, my dad was seriously ill with a lung infection. Even if he had been offered a place in a nursing home at the time, he would have been unable to go. A letter like that, I believe, is nothing short of bullying.
My parents have been VHI members all their adult lives. Their policy covers them for six months' hospital care per year. It was certainly a consolation to know that was there. However, what about cover for a nursing home or nursing care in the home?
According to a VHI spokesperson, the company does not provide cover for long-term nursing home care, nor does it provide cover for long-term assisted care in the home.
Mary McCormack, managing director of Tara Winthrop Private Clinic in Swords, says the bed situation in nursing homes is quite tight at the moment in that area of north Dublin.
"There are at least two public nursing facilities in the area that are unable to open fully due to funding issues," she says.
"It is very important for the health and social well-being of our residents that they are visited often by their next of kin and other relatives. In my opinion, distance would be of first consideration for the next of kin."
Eamon Timmins, head of advocacy and communications at the older people's charity Age Action, thinks that the Fair Deal system is, despite its name, unfair.
He says it treats older people in need of essential care differently to other members of society who may also need expensive health care -- eg, those who need cardiac or cancer treatment.
"For older people", says Mr Timmins, "they are being asked to pay 80pc of their income, up to 15pc of the value of their homes, and five per cent per annum of their other assets. No other section of the healthcare system is charged for in this way. If all healthcare was charged for in this way there may be uproar, but at least it would be fair to everyone," he continues.
According to Age Action, one of the major challenges for the health services will be how to meet the needs of Ireland's ageing population. "With nearly 60pc of older people suffering from a chronic illness or disease and 30pc of older people having a disability, the health care many older people need is at home, and in their community, rather than in an acute hospital," says Mr Timmins.
Obviously, this is a topic that affects everyone, as we're all heading in the same direction. Nobody wants to think about long-term illness and old age but if we did I'm sure, if at all possible, we'd want to stay in our own homes.
If we want Ireland to be a place for old men and women, we need to change the current system.
In June of last year, I was in France with my husband and children when my brother rang me about my dad. I made it to the hospital that night, not sure if I was ever going to see him alive again.
My mother, brother and myself, together with dad's brother and sister, took shifts to keep a daily vigil. I was sitting alone with him one evening, holding his hand, when he said: "What do you think is the right thing to do, Catherine?"
I paused for a moment, and said: "Get well Dad -- we would love to see you home."
The nursing home meets all my dad's care requirements and we're very grateful. It's not quite home but it is one step closer to it. I now need to do the right thing by my dad and try to get him home. He is not just some statistic. He is my dad.