Professional Ignorance Must Change

My grandmother was a nurse, so were two of her daughters. My aunt served in the Queen Alexandra Nursing Corps, and my mother qualified during the Second World War first as a State Registered Nurse, then a State Certified Midwife.

After the war ended, the National Health Service was introduced. Mother was tremendously proud of her profession and of the achievements of the new health service. As you would expect, I grew up to respect health professionals and to support the NHS.

So it goes hard with me to make negative criticism of the care and professional standards I have witnessed during Mother’s hospital stays. I expect health professionals to know their stuff, and when I realised that not just one or two, but the majority knew little or nothing about dementia, it was an unwelcome shock. Worse, they were not willing to admit their ignorance. My suggestions and advice were largely ignored, some staff listened to me with barely concealed impatience. Who suffered from this? Why, Mother of course. I am sure I am an irritating relative, but I’m not going to sit back politely and I watch medical staff, from the consultant downwards, make life more difficult for Mother than it already is, or dismiss her as incapable, without intervening.

It felt as though there was an accepted culture of dealing with patients with dementia, which, although ineffective, was not going to change any time soon. Some staff are visibly embarrassed at how they do not know how communicate effectively with confused and elderly patients. We tend to move away from things we are not good at, so neglect becomes an issue. The fault is seen is lying with the patient, not the staff’s lack of skill and training in adjusting their communication methods to suit the patient’s needs.

Another patient in the same bay as my mother was calling out. She also had dementia and was evidently confused and frustrated. Her language became increasingly colourful. Staff tutted, told her off and described her as a nuisance. I only saw one nurse approach her with any degree of understanding and sympathy.

Given that the numbers of people with dementia is expected to rise, this seems to me to be a crisis. The medical profession needs to start to address how it cares for people with Alzheimer’s Disease or vascular dementia in hospital as a matter of urgency. At the moment these patients are getting a raw deal.

The elderly are vulnerable to all sorts of abuse, both physical and emotional. They need and deserve our protection. too often they are not able to speak up for or to defend themselves. If we treated sick children in hospital the way we do our elderly there would be a national scandal.

Oh, and I have written this in the new full screen format, and it feels much nicer. Not as cramped!

21 thoughts on “Professional Ignorance Must Change

  1. How right you are Isobel.

    There came a time when I had to admit defeat with mum. It took over three years and I gave it my very best but finally months of days without any sleep but for what I could snatch during her Day Care visits and none at all at weekends, I finally cracked.

    The clinics, hospitals and centres (on the Fylde coast) she spent varying times in were, I believe, excellent and I got the impression everyone knew what they were doing and genuinely cared, but eventually I had to get her into a home. I couldn’t give her the quality of care she needed any more. Or perhaps that’s what I convinced myself; I hope that’s true, I just don’t know.

    It was close by and I got a job driving a cab so I was able to see her every day and often take her for rides in the country or park on the sea front, which I think she enjoyed. The home seemed just right, her bedroom had a view of the Ribble estuary and one of the staff was the daughter of mum’s best friend, the others were young and cheerful and happy.

    Then I had to come down to London for a couple of days and on my return I found her lying back in her armchair, comatose and with two awful black eyes. One of the youngsters came up to me in tears and said ‘honestly, I only left her for two minutes.’

    Mum had a habit of rocking backwards and forwards to ease her back and she had fallen onto the floor and knocked herself out. One of the two proprietors came in all flustered and full of excuses and said perhaps they ought to call an ambulance. It was then that I discovered he fall had occurred the previous afternoon. I was stunned.

    She died in hospital two days later without recovering consciousness. Aged 95.

    I thought of suing them but what the hell. It wouldn’t bring her back. So I left it at that, with a month’s outstanding I refused to pay.

    I think they were glad I only did that because I never heard from them again.

  2. I have to agree with you Isobel, wholeheartedly too.
    Can I suggest you write all you have written here, and more, along with some of your own/mothers, experiences, to your local MP, with a copy to the PM. This may sound over the top, but its the only way to get your message across. However, before you do that, start asking questions of the ward sister where your mother is, questions like:

    How many of the nurses on the ward are qualified to nurse dementia patients?
    What, if any, are those qualifications, what training was involved and where it was carried out, etc etc? All this information is available through freedom of information.
    If the sister, or whoever is in charge of the ward is uncooperative, make an appointment to speak to the hospital manager, and put these questions to him/her.

    Then, when you are armed with the info, write your letter to your MP, and the PM.
    Unless the problems are brought to the attention of the powers that be, patients, and their families will continue to suffer. If no joy, go to the media.

    After all, dementia can happen to any of us, even the PM, even your MP, even the nurses on your mothers ward, if that happens, lets hope they have qualified nurses caring for them.

    • She’s been discharged Val, and to be honest, at the moment I don’t feel I have the time or energy to take on the hospital authorities or enter into a correspondence with my MP. The last time I wrote to my mother’s MP, he pointed out that as I don’t live in the same constituency he wasn’t able to help me.
      I really hope she won’t be admitted again, but asking who has the qualifications to deal with her may be effective. Or is it going to be that half a day’s training counts as qualified? And how would I find out?

  3. Just by asking the question, the mention of you making further enquiries into the matter, makes people sit up and take notice Isobel.

    Take care.

  4. I do think that Val’s suggestion of asking questions and kicking up a fuss is a good one, but I can understand how drained you are by the whole experience. Being told by your Mother’s MP that they cannot assist you is appauling!

    I’m not sure whether you think that the staff where your Mother lives are better at understanding her problems and communicating, since they are working with the elderly every day?

    • It’s been a slog, but I think most of them have got there now – another reason for not wanting to move her again. Mother’s new keyworker thinks her own mother has Alzheimer’s so we are swapping notes.

  5. Isobel, I went to a meeting a dew weeks ago, it had been advertised in our local paper, that our MP was holding a Q&A meeting at a local hotel. I went along with my pal, who is a practice manager, in general practice. The people who organised the gathering were the ‘friends of the hospital, and general do gooders. Two of the many items brought to our MP’s attention, was the Ambulance service, and District Nursing, I won’t bore with the details, suffice to say, our MP said “thank you for bringing this to my attention, I didn’t know this, but I’ll look into immediately”. I put my hand up to ask a question….
    “As you knew the problems under discussion in advance, would it not have a good idea to have invited a representative from the Ambulance service, and the district nursing team? they are the people in the best position to answer these queries” The organiser spluttered a bit, the MP stuttered a bit, in the end the organiser said “Well it was advertised in the paper, they could have come”….. “Not quite the same as an invitation is it” I said.
    The problem is Isobel, nobody wants to take responsibility for their actions, too many managers, not enough qualified people at ground level where the important people are, the patients.

  6. It sounds a terrible thing to say, but if i got a call in the morning to say Mother had died quietly in her sleep, I’d probably be relieved. That doesn’t mean I wouldn’t be upset and sad, but the anxiety about how her care is going to go, and fears for her quality of life are almost stopping me enjoying her now. I’d prefer her to die at home with dignity, in a place she knows with people around her she considers her friends, than to live another ten years in a nursing home where she is forced to sit in a day lounge all day long, and possibly even have to share a room at night.

    • No, don’t ever think that is a terrible thing to say, Isobel.

      I know how you feel. The ups and downs and her confusion, and your worry about how she is coping are all understandable and I do absolutely agree.

      It doesn’t mean you don’t love her but you want the best for her. If there is no chance of improvement or a good outcome then I think you are right.

      I felt exactly the same about my mother; it was a dreadful shock but in some ways the best thing for her. I truly believe it was.

  7. Sophie is right.

    And so is Val.

    It is very sad that professionals have not even been able to listen and learn from your knowledge of your mother. When I worked in paeds one of the mantras was that mother is usually right. ‘Listen to the mother.’

    This should be turned on its head in your mother’s case: ‘Listen to the daughter.’

    • Even sadder that to begin with I thought they knew what they were talking about!

      I’ve got a leaflet to fill in via the Alzheimer’s Society called This is Me, which may help with any future hospital admissions, though I sincerely hope that there aren’t any.

  8. Just to say, Isobel I met a patient at work a few days ago with a specific problem and he also has dementia. I can honestly say that you and your mother were on my mind during my dealings with him. Your blogs about the difficulties with professionals have influenced me greatly.
    I have not been back to that practice yet, so I haven’t been able to follow up on the outcomes and effect of my interventions, but I was heartened by the patient’s wife who was so pleased to have felt heard and appreciated.
    This sounds as though I’m blowing my own trumpet, but it is intended to show that you do make a difference and a very important difference to the care of others.

    • Thanks Pseu. That has cheered me.
      I think many professionals, not just medics and para-medics, are happier talking to each other than the ‘laity’.
      I know in my own professions we use specific language that can exclude people outside the professions.
      I am so glad that relative felt heard and that you got positive feedback. Brava!

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