Sunday, 26 May 2013

Part 1: Acute care and dementia………

As we know there is much written about the devastating effect hospitals can have on those with dementia including increased confusion, malnutrition and in some cases death.  This is the first of 3 blogs on my experiences of acute care whilst my dad was in hospital.

 Last year my dad was admitted to an acute hospital with pneumonia. Sadly during his time with dementia (7 years) we had struggled to access care and support within the community in particular the last year of his life, when in fact his needs had become more complex and he would have benefited from advance care planning and input from a co-ordinated and integrated team. Because of a lack of capacity and capability within the community services to provide more intensive care in the home environment our only option was to have dad admitted to hospital.

Dad was very frail he needed 24 hour care, was unable to communicate his needs, bed ridden, incontinent and unaware of the need to eat or drink. Dementia has a devastating effect on the brain which I don’t think many people realise, not only does it rob an individual of their memory, as it progresses they lose the ability to talk, walk, eat or drink. They don’t understand commands and find the world around them frightening and confusing.

Imagine my dad then who had received 1:1 care provided at home by my mother admitted to a busy acute medical ward where 1 registered nurse was responsible for 12 acute medical patients with an HCA to share between 24 patients. It doesn’t take a rocket scientist to realise that an elderly frail person with dementia is likely to deteriate quickly if one nurse is responsible for 12 other elderly frail patients. As many of you will know I am a nurse myself and I know that I could never give the level of person centred care needed if I was responsible for 12 other ill patients. Acute medicine is a busy area for any health care professional to work, many patients have complex needs and I know many nurses will finish at the end of their shift knowing they have not delivered the care they would wish to give their patients. It is these nurses that I urge you to speak out to your managers, please do not accept that you have to work in these conditions. Ask yourself how you would feel if it was your loved one lying in that bed, helpless, vulnerable, unable to use the call bell, or articulate their needs.

I often used to liken dad to a young baby, although I feel very sad to have to think of it like that. For dad needed to same level of care as a baby did. He wore incontinence pads that looked like nappies, he needed changing and cream applied on his bottom as you would do for your baby. His food was pureed and he needed feeding otherwise he would have died of malnutrition and dehydration. He could not be left on his own and in the last year of his life became bed bound. So can I ask, would you feel it acceptable to have 1 nurse look after 12 young sick babies on the ward? No you wouldn’t and we have minimum staffing levels for paediatrics, midwifery and ITU so why do we not for frail elderly or vulnerable patients. You might argue that on the children’s wards parents help with the caring and yes many do, however the elderly and vulnerable are not as lucky. Many do not have family or carers to look after them, there are completely reliant on the need of the nursing staff to provide that round the clock care.

So it would come as no surprise to you then to hear that dad often did not get his pads changed all day or turned to prevent pressure sores. He was on an air mattress; however this does not alone provide adequate prevention in skin break down.  Because of this his skin in his groins became very sore and mum found this very distressing to see as dads skin had always been perfect before he came in to hospital. For mum the only solution to ensure my dad got the level of care he needed was to come in every day for 9 hours which she did every day for 9 weeks. She knew that there were not enough nurses to ensure dad was fed, changed or offered drinks to keep him hydrated. She was given the nick name matron by the other patients as she became part of the fixtures and fittings of the 6 bedded bay.  She took it upon herself to look out for the interest of the other patients, often going to find a nurse if one of the patients was trying to get out of bed or reassuring someone who appeared upset or distressed. It became very obvious very quickly that there were not enough staff to care for the complexity of care needs for these patients, many had dementia and I can now see why many deteriated so quickly once in hospital.

Dad had been suffering with recurrent chest infections prior to his admission however it needed my mum to ask the staff if he could be referred to speak and language therapy (SALT) as we were aware that his swallow could be the cause of the recurrent cough and chest infections. It took 6 days from the original request for him to be seen. His swallow was the problem and he was commenced on thickener for his drinks and pureed food.  Have you ever seen the pureed food that comes pre packed in plastic containers like the food served on a plane? Well the only thing this food had in common with the plane food was the packaging! It was the most unappetising meal I have ever seen which was compounded by the fact it was served in the plastic container. For someone who is elderly and frail with loss of appetite presentation of food is so important. It may have been high in nutritional content however the look and sight of it would put off the most hardened ready meal fan!

As we know weight loss in dementia is very common especially as the disease progresses, for anyone ill in a hospital we should consider the appearance and taste of our food. Why do so many hospitals now have food brought in and reheated in the microwave? Why have they shut down their kitchens and stopped preparing fresh appetising food? I visited a hospice last week where the chef told me he cooks food to order for the patients that are not feeling well enough at meal times but might fancy something later in the day. I know hospices are smaller and have less numbers to cater for but why can’t we provide that for our patients in acute hospitals? Something we need to think about!

Staffing levels is the elephant in the room at the moment, that’s why I was so pleased to read the article this week in the nursing times by Trish Morris- Thompson on mandatory staffing levels and the formation of the Safe Staffing alliance.  As she says “To Provide safe, high-quality care it is clear there is a need for mandatory staffing levels” I am totally behind you Trish and urge other nurses whatever grade to get behind this campaign, we owe it to our patients and we owe it to ourselves.

In next week’s blog I  will cover my experience of the continuing health care funding process within acute care and the devastating effect it had on both myself and my mother, until next week………. Thank you for listening




Sunday, 19 May 2013

8 months and counting

This is my first attempt at blogging on my own! I have previously written for the Nursing Times about my families experience in caring for my dad who had Alzheimer's however I have not written much since he died.
This does not mean however that I haven't been busy campaigning for better care because I have. Many of you will know me from twitter @nursemaiden this is where I am most days chatting, posting links and networking with like minded people who care like I do about those living with dementia. For me twitter has been a life saver not only whilst my dad Ray was alive but also as I continue to campaign in his honour.

My thoughts for this blog are around sharing our journey from diagnosis up until his death and then work with you to take that learning and see how we can use it to improve care for others living with dementia right now. As a nurse I found the system totally disjointed and reactive, what I would like to see is a coordinated, integrated health and social care system that proactively manages the care for those living with dementia. Not a reactive service that relies on the acute sector as its default care provider. We know that in many cases hospital care can cause rapid deteriation in an individuals condition and I intend to write about my dads time in hospital prior to his death in future blogs.

I hope you will find my dads story inspires you to improve the care you give whatever your role and I hope you will join me in my journey as I work to raise the profile of dementia and improve the care and support to those living with it. Together we must find a way to make a difference, come let's make a start........thanks for listening.