A Good Samaritan

My daughter recently started a four-year training course to become an occupational therapist (OT). Barely a day goes past without her mentioning some aspect of the course which has captured her imagination. Disability awareness is an important part of her training. She is rapidly learning how the other half lives.

All occupational therapy students get to experience disability first hand. My daughter was recently supplied with a pair of black-out glasses and a white cane and was asked to negotiate her way around the college campus as a ‘blind’ student. Hands-on training exercises like this are by far the best way to learn about the difficulties faced by those living with a disability.

My daughter’s next challenge was to experience using a wheelchair.  This time she and another OT student were asked to negotiate crossing a road in their wheelchairs, to make a purchase from the shop opposite the hospital entrance. They were dispatched with one helper between them to assist as required. The girls had no difficulty propelling their chairs manually across the road but found it hard to negotiate the kerb on the opposite pavement. As their helper could only assist one wheelchair at a time, a passer-by jumped to the rescue of my daughter and helped her to mount the footpath in her wheelchair. She thanked him profusely but this good Samaritan wasn’t happy to leave it there. He insisted on wheeling her into the shop where she was to buy her lunch. This shop is frequented by college students and the shop assistants are well used to seeing the OT students ‘in training’. As the good Samaritan pushed the wheelchair up to the  sales counter, the shop assistant recognised my daughter as a regular customer and decided to tease her. He leant over the counter dangling a chocolate bar in her face and said “I’ll give it to you for free if you stand up”.

I’m told that the good Samaritan looked totally mortified and then fled!

Vive la France

Okay, so here’s how the Irish health service could/should operate if it was properly resourced and managed. The following article was published in the Irish Times and documents the experience of an Irish person who required emergency care in a hospital in France.  I’ll leave you to draw your own conclusions.

Vive la Différence

“No waiting room, no trolleys, no queues, no admission fee and free parking. It was very strange indeed”, writes Michael Foley

“It is 1.30 in the morning, the first night of the annual Feria, when Beziers, in the south of France, goes en fete for a week of partying. Getting to A&E through streets thronging with revellers is a feat in itself, but arriving at the hospital is an even more unusual experience.

I rushed to hospital, with what later turned out to be a blocked artery.

Where is the waiting room? And where are all the corridor trolleys gone? Well, there is no waiting room and no queue, no line of people drunk or groaning with pain, and facing a 12-hour wait, just a woman at a desk and a sliding door that lets you straight into your own single-occupancy examination room. Parking is free and there is no €60 admission fee either.

Very strange indeed. It is so strange that we waste valuable time assuming we are at the wrong place. Why no waiting area? Goodness me, said a French nurse, urgence, the French name for the A&E, means someone requires urgent treatment; you could hardly expect someone in need of immediate treatment to wait, now could you?

It has to be said that when I last attended a Dublin hospital, eight months previously, I did not have to wait either. As I pointed to my heart and handed over the €60 casualty charge, a wheelchair almost buckled my knees as it wheeled me into triage, but behind me were others who would be waiting and waiting and waiting – unlucky enough not to have chest pain.

Back in Beziers, and two-and-a-half hours later, I had blood taken, a brain scan, a chest X-ray, and all the test results returned, and was tucked up in bed. At no stage did I see anyone on a trolley in a corridor.

Trolleys were used to ferry people. Patients slept in beds. My room, in a public ward, was for two patients, with a toilet and shower en suite. The equipment was new and worked. The bed was high-tech and moved in almost every direction.

What followed were days of tests, done without delay, and all ordered by specialists, who personally delivered results, usually within the hour. I was given scans, X-rays, MRIs and investigations I thought I might have been given eight months previously in Dublin. “Should I have had this test before?”

The doctor was non-committal.

The first specialist was a neurologist. The Centre Hospitalier de Beziers has three (as opposed to a dozen for the whole of Ireland). The doctor was a quiet, respectful woman who was available throughout the day, and who delivered the test results she herself ordered.

There was no entourage, no one to fawn and laugh at her jokes. She even had office hours when family could call in for information or advice – no need for intervention, divine or otherwise here.

We kept checking as to her status with the nurses, because her availability was akin to that of a registrar or a junior doctor in an Irish hospital, but yes, she was everything one could possibly want in one’s neurologist – professional, available and attentive. Extraordinarily, if a test was required, it was done immediately, and she delivered and discussed the results in person.

The second specialist, a vascular surgeon, again was one of three. When surgery was decided, I was moved to another floor and opted for a private room. Cost €40 a night.

Surgery was successful and after a period of recovery, I was out. When discharged, I was given a slip that was officially stamped, this is France after all, and that was it; I paid not one cent.

Under the EU health insurance regulations, I received the same treatment as a French person – 80 per cent of the cost borne by the state – and like a French person, my insurance (in my case, the VHI) paid the rest, including the cost of the private room.

One of the most remarkable features of the hospital was the level of hygiene. And not a nun in sight. The corridors were completely clear. The cleaning trolleys, with their colour coded buckets for every individual surface, plied up and down the corridors.

Masks and sprays were used as appropriate, from one patient to another. Head-to-toe disinfection twice before surgery . . .

In the Dublin hospital I attended recently, there was one shower for some 50 patients. This was in a room with a bath fitted out for disabled use. There were cracked tiles around the shower. The bath/shower room was also used as a store. If you were able to walk, you washed and shaved at a row of washhand basins, like a 1960s boarding school.

The VHI was amazing, constantly phoning me and my wife to see if I was alright. Did I want a second opinion? Was I was satisfied with the doctor? Was everything explained adequately? It also had a French-speaking doctor contact the hospital doctors who came back to explain what was going to happen.

Isn’t it extraordinary that the VHI pays no such attention to the interests or concerns of their members in Irish hospitals?

Would I have returned home for treatment if it had been feasible? Not if the advice I was given was to be taken seriously. Proof of the serious lack of confidence there is in the health service in Ireland was evident in the number of calls I had, from friends, colleagues and family, telling me how lucky I was to be sick in France and not Ireland: “Stay where you are. It’s the best place to be.”

If I returned, they thought, I might not get a bed, and if I did, I would be at risk from MRSA. “MRSA is a given,” said one friend, whose mother recently contracted it.

For the next two weeks, a local nurse visited to clean the scar and eventually remove the staples holding the surgical opening together. Cost for a home visit, €5.50 a day. But it is not just money that is the main difference between the two systems as experienced by patients. I was treated as a critically ill patient, the same as if I were French, by nurses, doctors, specialists and home visits,

I even have a GP in France now, who gave me a free consultation, just to get to know me. I only hope we don’t get to know each other too well.”

With thanks to the Irish Times for their online publication.

Now Hear This

While out doing my shopping the other day, I found myself walking behind a young mum who was happily pushing her child along in a buggy. Nothing unusual in this or so I thought until I spotted that the mother was wearing bilateral hearing aids. She had a skin-toned hearing aid mounted behind each ear and they looked like the sort of thing that my granny would have worn. The poor girl , I thought.  It’s bad enough having to cope with a disability such as hearing loss but surely she shouldn’t have to put up with these very uncool-looking devices just to be able to hear.  Why can’t hearing aids look sexy?

As I walked back to my car I couldn’t stop thinking about this injustice.  In this day and age of technology where every second young person is wearing an earphone attached to a mobile phone, iPod or whatever, it seems incongruous that hearing-impaired people should be expected to disguise their hearing loss. Since the ban was introduced to stop the use of hand-held mobile phones while driving, a huge range of fancy ear pieces have appeared to facilitate drivers who want to talk and drive.  I fail to see why hearing aids can’t be made to look like the multitude of earphones now on the market.  I guess like everything else, it all comes down to money and the skin-toned version above, is probably the best the HSE is prepared to fund on a medical card.

I did a little research and came up with the same old design but at least I found it in some more interesting shades.

Have you ever seen anyone wearing a funky looking hearing aid?  I know I haven’t.  Instead of blending in a hearing aid with the skin, why not make a statement with them? Wheelchair users get to have fun with colours so why can’t hearing aid users have fun too?

Then I looked a little harder and I came up with these from a US manufacturer.

These ones are glitzy enough to resemble jewellery.  I’m sure they’re very pricey but they’re fun and this new generation of hearing aids can be used as wireless receivers for cell phones as well as computers, iPods and TVs. It’s great to find that for some people at least, hearing devices can become an item of self-expression. Some manufacturers have even renamed them PCAs or Personal Communication Assistants.

I’d be very interested to hear other people’s views on this issue. Surely I’m not the only one who thinks that the hearing aids supplied by our health service, are seriously uncool?

A Better Place

I knew the moment I walked into the dementia unit at the nursing home that something had changed. My mother was up and dressed and sitting in her wheelchair beside the window. I settled down beside her to chat and it was only then that I realised what was different… one of the long term residents was missing and her possessions were all neatly piled on top of her bed. Poor Hannah* had died during the night.

The other residents of the unit were all sitting staring into space as per normal and while they appeared oblivious to the fact that one of their own was no more, a sombre mood was palpable. Looking at them sitting in silence, I found it hard not to ponder over who’s turn it will be next… for that is the reality of this unit.

Alzheimer patients slowly fade away, it’s like a living death as bit by bit they withdraw from the world. The staff of this unit are very supportive of the families. We are like one big family who are on a difficult journey together and everyone supports one another. When a bereavement occurs, it affects everyone in the unit.

When Hannah’s family arrived to collect her belongings this afternoon, the sense of togetherness was powerful. We all hugged and shed a few tears and remembered the good times together. We’ve come to know each other well over the years and today’s farewell was a reminder that one day my turn will also come, to say goodbye.

My mother is one of the few residents in this unit that can still hold a conversation although she has great difficulty processing her thoughts. She loves to listen to the staff chatting as they work and will occasionally chip in with her penny’s worth.

Today, when I was discussing Hannah’s demise with the staff, my mother suddenly joined in and asked “well, is she better yet“?

I looked at her and smiled. “Hannah’s in a better place now, Mum, don’t you worry” and she smiled back at me happily.

Rest in Peace, Hannah.

* denotes a name change.

Why, Oh Why?

I accompanied my elderly mother to a high-tech private hospital yesterday for a check-up with a specialist. While she received nothing but the best of care, I couldn’t help but feel very uncomfortable with the whole experience. The gap between the public service and the private sector seems to be ever widening and I really fear for the future of our health service if privatisation continues to be seen as the way forward.

My mother is a long-term resident in the dementia unit of a large public nursing home. She is severely physically disabled and suffers from an unusual form of dementia. When she was admitted to the nursing home some years ago, I was told that she would no longer require health insurance as all care is fully covered by the public health system. Knowing what I do about the state of our health service, I ignored this advice and opted to maintain my mother’s basic insurance cover. Every citizen in this state is entitled to a bed in a public hospital but the reality is, only the very sickest patients and accident victims succeed in getting a bed when they need it. Otherwise, the waiting lists for specialist appointments, out-patient services and elective admissions, are atrocious. I wanted to keep her insurance as a safety valve in case we ever needed to access specialist intervention for her.

As things turned out, my mother developed a nasty auto-immune condition recently and required urgent specialist attention. The nearest appointment we could get for her at the local public hospital involved a four-month wait. A private appointment was available at the Beacon Hospital for the following day so naturally I gave the go-ahead to proceed with this appointment. Her insurance policy covers out-patient expenses incurred for investigations carried out in a private hospital but it offers little or no help with appointment charges. Frankly, I didn’t care how much it all cost as long as my mother got the urgent help she needed. As it transpired, she required day surgery and her insurance thankfully covered this expense so the charges for her appointments pale into insignificance by comparison. She will have to be carefully monitored until her condition settles.

The Beacon Hospital is quite literally a beacon of the private healthcare market. It’s quiet and efficient but it’s also ‘over the top’ in luxury and exudes wealth out of every corner. The leather armchairs were so huge in the waiting area where we checked-in yesterday that it was almost impossible to manoeuvre a wheelchair. The sight of my poor mother slumped in her wheelchair could not have been more incongruous with the exclusive surroundings we found ourselves in. Her world in the nursing home is very far removed from this plush hospital environment and I felt sick just thinking about how inequitable the whole health system has become. Why are we forced to access care in ‘over the top’ facilities like this when all that’s needed is a basic health service that works efficiently? Why does there have to be such a contrast between public and private care? I hasten to add that my mother was treated with the utmost respect at the Beacon and I’m very grateful for the treatment she’s received there. However, she’s also treated with the utmost respect at the nursing home but her surroundings there leave a lot to be desired. Why does it have to be so different? Why can’t we have a public health service that treats all citizens and especially it’s oldest ones, with the dignity they deserve?

The Beacon Medical Group has won the tenders to build three of the co-located hospitals that are due to be built on public hospital sites (Beaumont Hospital, Cork University Hospital and Limerick Regional Hospital). If what I saw at the Beacon Hospital yesterday is what our Minister for Health envisages as the way forward for our health service, then I despair. When are people going to wake-up to what’s happening to healthcare in this country, and shout STOP?

Emotional Storm

I watched a television programme recently about Irish patients with cancer. Any journey with cancer is an emotional roller coaster and this programme was no exception. My emotions were completely raw by the time it was over. One particular scene strongly resonated with me and brought back a memory I’d completely forgotten about.

The programme did not make for easy viewing. If you had recently been diagnosed with cancer or had suffered a bereavement, I would imagine it must have been very difficult to watch. We were not spared the stark reality of cancer. One fine lady with a wonderfully positive outlook on life, was given the news that she had advanced terminal cancer which was inoperable. She amazed me in the way she took this terrible news totally in her stride. She died a few short months later. We watched another elderly man who had been diagnosed with rectal cancer, undergo pre-operative radiotherapy and chemotherapy to shrink the tumour before surgery could proceed. Thankfully in his case, his operation was totally successful and no further treatment was required. It was his return home that resonated with me. As I watched him sit down in his favourite armchair while his wife went to put the kettle on, I witnessed him experience the realisation of how good it felt to be finally safely home.

When I returned by air last year following complex surgery in the UK, I will never forget the emotional storm which took me completely by surprise as the wheels of the plane touched down. I’m not particularly patriotic about my country of birth but on this occasion I was never so glad to be back in Ireland. In preparation for the surgery, I had put meticulous plans in place so that life would run as smoothly as possible during my absence from home. Any thoughts on the experience that lay ahead never went further than hoping for a successful outcome to the surgery. It was a particularly risky operation but all went well thanks to the expertise of the surgeon involved. My post-op stay in the NHS hospital also went smoothly and before I knew it, the day arrived when I had to make the long journey home. Unfortunately, I became unwell on the way from the hospital to the airport and had to be wheelchair boarded on to the plane. This experience taught me a great deal about the difficulties faced by disabled people in dealing with the ignorance of those lucky enough to be able bodied. I found the flight home exhausting and it was a relief to see the night-time landing lights come into view. As the plane touched down, I was overcome with emotion and burst into tears. I think at that moment I had the same realisation that the elderly man with cancer had experienced. I’d been able to plan ahead for most eventualities but the one thing I hadn’t contemplated, was the enormity of the relief to have survived the ordeal. I can’t tell you how good it felt to be home.

Dementia Happens

Old age has no respect for class, creed, fame or fortune. It’s an inevitable process… that is… presuming you get to survive that long.

By 2030, almost a million people in Ireland will be over 65 and the older you get, the more likely you are to suffer from dementia. There are approximately 38,000 people living with dementia in Ireland today.

There is no immediate hope of a cure for Alzheimer’s disease and with Ireland’s ageing demographics, it makes sense to plan ahead for the needs of an ageing society. A new study has found that people with dementia in residential care need to feel safe, secure, occupied, at home and connected to their former lives. Sadly, for the majority of the 7,000 dementia patients in residential care today, very few actually benefit from specialised dementia units.

My 80 year old mother has been in full-time care since 2004. She is wheelchair bound due to severe osteoporosis and also suffers from an unusual presentation of dementia. She is totally dependent on others for her everyday needs. For her first two years in the nursing home, my mum was terribly unsettled and became very depressed by her increasing dependency on others. Her dementia left her unable to follow simple instructions and she had frequent falls when left alone. The family were advised that she would be safer if moved to the dementia unit within the home where she could be constantly supervised. We agreed to this plan and shortly afterwards, she moved into the secure unit where she settled in very well. The care is fantastic there but the conditions are far from ideal.

This dementia unit is a locked unit for women only, with it’s own dedicated and very caring staff. It is basically one long, narrow, open-plan room where eleven women are living out their final days in horribly cramped conditions. They have to eat here, sleep here, are washed and toileted here, entertained and most likely will die here too. This poorly ventilated, overcrowded room is their home. Personal space consists of a bed, a bedside locker with tiny wardrobe attached and enough room for a chair beside the bed but nothing else. The unit has two small toilets neither of which are wheelchair accessible so only the few who are mobile, can use them. The residents in wheelchairs must use commodes with the curtains drawn around their beds for limited privacy. Some of the residents are bed-bound and are doubly incontinent. Meals are served up in this environment at two small tables at the end of the room and most of the patients must wait their turn to be spoon fed by the staff. The only form of entertainment is a television and a DVD player which were donated by the family of a deceased patient. A CD player was recently purchased by the ward manager so that the ladies can enjoy calming background music with their old-time favourites played over and over again – not that anyone would notice. There are many different levels of dementia in the room. Some of the patients have withdrawn from the world and just lie or sit staring into the distance all day, every day. Others are agitated or aggressive and have to be carefully managed so that they do not upset the other patients.

Dementia is not a pretty disease. There is little or no communication between the residents of this unit. This fact nearly broke my heart when my mum first moved in as I felt she was being denied a basic right to enjoy the pleasure of interaction and would deteriorate rapidly as a result. To give the staff credit where credit is due, they were quick to recognise this problem and they go to great lengths to chat with her as they go about their duties. I must add here that the staff are wonderful and I have huge admiration for the work they do in very difficult conditions. They look after all the patients with great love and compassion and I know my mum is very lucky to be in such good care. I regard the staff as part of the family these days – we work together as a team through thick and thin.

The world of dementia is a frightening and bewildering place for sufferers. My mother is safe and secure in her present surroundings but her environment leaves a lot to be desired. It does not resonate of home and it is poorly adapted to compensate for the disability of dementia. How would you like to end your days in a shared room with minimal privacy or dignity afforded? We need to take a more holistic approach to dementia by providing social, psychological and environmental supports and not by just throwing drugs at it. Surely, with the booming economy we live in today, this vulnerable section of society deserves better?

The real meaning of Christmas

Today I spent the day with my parents. Nothing unusual there I hear you say, except that my Mum and Dad are both resident in a nursing home and Christmas to them, is just like any other time of the year.

My Dad will be 88 shortly and is still a sprightly, well-dressed man who loves any excuse for a gin and tonic. Every day after his lunch, he gets spruced up to go and see Mum where she resides in the Alzheimer unit of the home. He polishes his shoes, puts on a clean shirt with a suit and tie, and then he’s ready for his outing of the day. Sadly, his short-term memory has completely deserted him and by the time he’s ready to go, he’s often forgotten the purpose of his mission. His memory loss causes him great confusion and anxiety. He has to be escorted to visit Mum to make sure he reaches his destination, and that he comes back safely again.

My Mum turned 80 recently. She’s been in the nursing home for over three years with a slow deterioration into dementia and physical impairment. She’s completely immobile at this stage and is barely able to sit propped up in a wheelchair. She has a tough time getting through each day but she still manages to smile and say thank-you to everyone who helps her. Thankfully she still recognises me as her daughter and yet whenever she introduces me to someone else, I suddenly become her twin sister. It makes for some interesting reactions and lots of laughs too.

I had great plans to do some Christmas shopping today after my visit to the nursing home, but it was not to be. My Mum was having one of those days where extra time, and reassurance, was needed. Dad too was in a muddle about almost everything. I sat with them both while Mum dozed in and out of sleep and each time she woke, she smiled with delight to see us there. My Dad enjoyed a gin and tonic which we rescued from the muddle of his bedside locker and we chatted away together all afternoon, with the same topics coming round and round.

This Christmas no amount of shopping will make life any easier for my parents. Their needs are few, but precious. My gift to them this year cannot be bought or packaged. Like that advert for a well-known brand of cider, they need nothing added but time.

Does She Take Sugar?

I had occasion earlier this year to use a wheelchair while travelling home by air. I was en route back to Ireland following a stay in a UK hospital for complex surgery on my skull. I had been discharged from the hospital earlier in the day and felt totally elated to be on my way home at last. However, the journey proved to be more of a challenge than anticipated and I ended up needing a wheelchair. The experience was a real eye-opener.

I’d walked happily out of the hospital to the car with my husband but by the time we reached the airport, I had lost all enthusiasm for the journey home. I knew I was in trouble. On getting out of the car I was overwhelmed by nausea and dizziness and could feel the blood draining from my extremities. I felt so ill on entering the airport terminal building that I had to lie down on the nearest row of seats while my distraught husband contemplated the next step. We had two options. He could call an ambulance to take me back to the hospital or we could soldier on and try to endure the flight home. We had been told at the hospital that the flight would not represent a risk following the surgery. I knew what I wanted to do and when I’d recovered enough to be able to speak again, I proposed the idea that I could manage the flight if only I had a wheelchair. I was sure that if I did my utmost to appear well enough, I would be allowed to board the flight. It felt like an insurmountable challenge at the time but I was determined to get home that night. My husband soon found a rickety airport wheelchair (with zero suspension) and we proceeded to the check-in desk. Now it’s a well-known fact that you need to be in the full of your health to fly with Ryanair but this was taking things to the opposite extreme! I could barely even hold my head up at the time. However on reaching the top of the Ryanair queue, I smiled sweetly at the member of ground staff while my husband made light of our circumstances and to our surprise and delight, we were checked onto the flight no problem. No extra charges were requested – wonders will never cease – not only that, Ryanair also provided a decent wheelchair and promised that I would be boarded first, ahead of all the other passengers. Life was looking up again!

However we still had nearly two hours to fill in the passenger departure lounge before take-off and that time seemed to go on for ever. I can remember noticing that everyone seemed to be snacking on some fast food or other and it all seemed really busy and noisy compared to the quiet of a hospital environment. I was still feeling very nauseated and also very cold. My head was heavily bandaged and while I wore a large headscarf to cover-up, I was unable to disguise my swollen face. The thing that amazed me the most was that people were so rude in the way that they stared. While we battled our way through airport crowds I could really sense the unwanted attention. I had no idea that the experience of being pushed in a wheelchair could feel so demoralising – all independence is lost – and a wheelchair seems to represent a passport to others to stare. It really opened my eyes to the conditions that wheelchair users endure and of course, not everyone is as lucky as me to have been only temporarily using one.

When the time came for departure I was dutifully wheeled to the steps of the aeroplane by my husband, accompanied by a Ryanair escort and was helped to board the plane while all the other passengers waited in the terminal building. It was a great help to get this little bit of VIP treatment though it wasn’t long before everyone else followed and of course many of them had another ‘gawk’ on boarding the plane. The flight itself was fine and on landing, Ryanair again came up trumps by providing a wheelchair for transport through the airport. Again, I had to endure endless stares and by the time we got to the arrivals hall, I burst into tears on being met by a dear friend. It was such a huge relief to be whisked home, away from the public glare.

Yesterday I repeated the same journey as I had to make a return trip to the UK for a check-up with the surgeon. This time I did the journey alone and in the full of my health. The news was good – the surgery has been very successful and I felt like dancing in the streets afterwards. On the way home through the airport last night, the memories of that wheelchair journey came flooding back. I thanked my lucky stars to be able to walk to that plane. I also resolved to never, ever stare again at anyone in a wheelchair.

And Ryanair – you can take a bow 😉