I wrote Beyond My Control as a personal account of events that began when my mother broke both legs in a nursing home and was transferred to a hospital where bad practice and lack of adequate nursing care resulted in grade 4 pressure sores that eventually caused her to die.
The book is a story of particular events but it was written to communicate a general message - to improve care for the vulnerable and to help people be brave enough to speak out about poor practice. This is the first chapter.
It was March 11th when my sister called; our mother had a broken ankle due to an accident with the hoist in her nursing home.
‘Accidents happen,’ my sister said.
‘No, they don’t!’ I replied. ‘Accidents don’t happen. If you’re using equipment, like the hoist, correctly then accidents do not happen.’
Mum’s leg and ankle had been put in plaster and she had been returned from the hospital to the nursing home. Our brother, Keith, would be able to visit today, but Ann, my sister, couldn’t get time off work. I told her I would sort my work out, take a few days off and go down to see Mum. I didn’t tell her about the serious concerns that I, in my professional role as a trainer, had been having about services in the past few weeks. She didn’t need to know that.
I was able to go down to the West Country the following week – a seven hour journey from my home on the east coast on five different trains. But I couldn't rearrange the current week's workload; it was too short notice and I didn’t want to let people down; I knew how difficult it was for managers to take staff off the rota to attend training and back fill it with other staff, or even agency staff. This was a personal and professional dilemma for me as I did not want to let my mother down either, but I knew that my brother and the staff from the nursing home would look after her. Mum had had a back injury when she was younger and as the years had gone on the problems with her spine had worsened, causing difficulty with walking; she needed help with maneuvering and personal care. Now she could not bear any weight on her legs and had to be moved using a hoist, in her forties mum was diagnosed with Type 2 diabetes which was controlled by a healthy diet and tablets. In all other respects was in reasonable health, or had been until this accident.
Putting worries about Mum to one side, I kept my appointment with the manager of a service (the general term we use for care homes and other services) to discuss what training she wanted. I was surprised at how warm and homely the service was and how friendly, welcoming and happy the staff seemed, despite be- ing very busy wheeling people in wheelchairs or hoisting them or supporting their arms whilst they walked to the dining room. They conversed with the individuals they were helping, but it was ‘talk as we go’; there was little time to sit and chat. I noted some staff calling the individuals ‘love’ or ‘darling’; I regard this as disrespectful because it implies it is too much trouble to remember names. I hoped these staff members would be on the training course so I could address such issues with them. I was told the morning shifts were the busiest and, as I left the service, I hoped the afternoon shift would be quieter and more relaxing, allowing the staff to spend quality time with the individuals they were caring for.
‘Wheelchairs are only for transferring,’ I heard the manager tell a staff member as we walked through the service, ‘Not for sitting in for long periods of time, as that can cause pressure sores.’
I held the training session on Dignity in Care for Older People and we worked through what are called the ‘person-centred values’, a set of principles that all staff should adhere to. They are Privacy, Choice, Respect, Independence, Individuality, Identity, Dignity and Rights. I asked for examples from the staff on how they promoted these values. Some of the values they found easy to tackle. For example, for Privacy, they came up with ‘Close the toilet door; put a towel over the lap whilst the individual is on the toilet; close the bedroom door; knock on the door and wait for a response.’ I added: ‘It’s important not to go into the bedroom if the individual isn’t in there and hasn’t given you permission to go inside – privacy is a basic human need and everyone has a right to it.’
When it came to Respect they got a little stuck. I gave them a hand-out to go through and this gave me the opportunity to say ‘You need to call the people you support by their preferred name. If there is a new individual in the service and his records say “Mr Terry Smith”, don’t automatically call him Terry. Ask him what he likes to be called. He may say he likes to be called Mr Smith; if he does, make a note of this so all staff will call him that.’ Some of the staff looked a bit sheepish. ‘Many of the people you support won’t like you calling them “darling”, “love”, and “lovey”. Why do you use these terms? In response I heard mumbling of ‘it’s easier’. We talked through this and staff could see how patronis- ing or disrespectful this can be.
Then we came to the issue of respecting individuals’ faiths. They stared at me as though I had said something wrong or something they have never heard of before.
‘Are there people living at the home with different religions?’ I asked.
‘Some,’ came the reply.
‘Are the individuals in the service offered the opportunity to go to church – or another place of worship – if they want to?’
‘Why only some?’ I probed.
‘We haven’t got enough staff for all of them who want to go to church.’
'I know it can be difficult because there are a lot of people living in the home and some need a lot of support. Have you thought of how they can attend church without taking the staff from the home?’ I asked. They gave me a blank stare.
‘You could discuss with your manager about using volunteers, or people from the church who are willing to pick one or two up in their cars and take them. How many people used to go to church independently before they moved into the home?’
The staff went through the individuals and found quite a few who used to go independently. I then questioned how many of these people were still able to go to church independently or would be if a lift was available. The staff were amazed when they realised that this was possible for quite a few. I advised them to discuss it with their manager, who might need to devise a risk assessment to ensure their safety.
As always when I do these sessions, Dignity prompted some interesting responses. I told them, ‘Some organisations have a policy to say that only same-sex staff will support individuals with their personal care. What about,’ I asked ‘the preferences of British white females?’ As I expected, this was greeted by a lot of blank stares. Someone said, ‘White females don’t have any culture so they don’t have any preferences’. This answer is no longer the shock to me it once was. Other trainers make culture an issue, but forget that the ‘default’ white British person also has a culture, just not a minority one. I told them, ‘White women have preferences too and you must ask them who they want to support them with their personal care.’
Then I asked, ‘How about making sure personal care is carried out discreetly to avoid humiliation and embarrassment? That means, for instance, not shouting out to colleagues that you’re now going to take Mrs Smith to the toilet.’
‘Oh dear! We do that sometimes,’ said one staff member and others smirked. ‘Okay, let’s do a simulation exercise,’ I told them. ‘Split into groups of three: one is a resident and two are staff. One ‘member of staff’ stand some distance apart from the two. The ‘staff member’ with the ‘resident’, shout to the second ‘member of staff’ that you’re taking the ‘resident’ to the toilet. Take it in turns for you all to be the individual receiving support. And then come back to here and tell us how it felt.’
And they did. ‘I felt so small.’
‘I was embarrassed.’ ‘I didn’t like it.’
‘No one needs to know that I’m being taken to the toilet.’ ‘The staff need to know so they don’t ask that individual again,
but they can see with their eyes that a staff member is taking someone to the toilet,’ I told them. ‘Was that a useful exercise?’ I got a big ‘Yes!’ in response.
When we came to Choice and Rights we had another interest- ing discussion.
‘What would you do if an individual who is a wheelchair user wanted to go swimming?’ I asked them.
‘They wouldn’t be able to go if they’re in a wheelchair, would they?’
I raised my eyebrows and looked at their faces, indicating that I was waiting for someone to respond to what had just been said, but an answer did not come.
‘Why not?’ I asked.
‘How would we get the chair to the swimming pool, and how would the individual get in the pool?’ one asked, with attitude.
'Black cabs take wheelchairs as do some other taxi firms. So the individual can get to the pool. How does he or she get into the pool?’ I asked.
‘The individual can’t because they can’t walk,’ said a staff member slumped in a chair.
'What you could do is find a pool that has facilities to help people get into the pool. For example, pools have hoists and slings. You may need to ring in advance for them to get the equipment out. What do you do if you ring a sports centre and they haven’t got a hoist?’
‘Ring another one,’ said the staff member, who was no longer slumped in her chair.
‘Yes, that’s right. You also need to encourage the individuals to inform the pool that they’re discriminating if they have no facilities for wheelchair users to get into the pool. If the resident can’t or doesn’t feel comfortable doing this, you can do this on their behalf.’
I went onto the subject of beliefs and asked for examples; the room fell silent. I told them that many of our beliefs come from our past – from family, friends, TV, colleagues, the way we were brought up, religious experiences, education and life experi- ences. I split them into small groups to discuss how their parents’ and grandparents’ lives had differed from theirs. They appeared to enjoy this and I asked them how their discussions related to the older people they supported.
‘My granddad says I should be grateful to have a lovely bath in the bathroom as he had to have a bath in a steel tub in front of the fire,' said one staff member.
‘Yeah, my mum only had a bath once a week when she was younger.’
‘My granddad changes his underwear every day but still only changes his shirt and trousers once a week,’ added another.
We talked about how they themselves showered once or twice a day, but how this might be a very different habit to those that the individuals they support might be used to.
‘Some of the individuals don’t like having showers,’ said one staff member and others agreed.
‘If they clearly show they don’t like having a shower, why can’t they have a bath instead?’ I asked.
‘Takes too long,’ came a reply.
‘How must that feel for the individual, who more than likely has never had a shower, but now has to have them?’ I looked at their faces and they silently agreed with me that this was wrong. I told them I would discuss it with the manager afterwards.
At tea break I could hear staff talking about what they had learnt and it confirmed to me that this was a worthwhile course for them. They talked about how they provided privacy and choice for some individuals and how they would now offer choice and independence to others. They were buzzing with ideas.
After the break we did some practical exercises. They were embarrassed at first, but then enjoyed learning from the tasks of feeding someone and changing an incontinence pad. They did these tasks with each other, asked for feedback from the person they had fed and changed and then swapped roles. Feedback included that they didn’t like yogurt dribbling onto their chin and they felt like a baby when the staff used the spoon to scoop it up and attempt to put it back into their mouth.
‘What could you have done?’ I asked. There was silence. ‘Use a napkin,’ I told them.
I wondered if the staff at my mother’s home were like these staff and, if so, did they have access to this type of training? I shuddered at the thought that they might not. Fortunately my mother did not need help with eating, but she did need help with going to the toilet.
‘I really didn’t know how embarrassing it was to have people in between your legs and putting a pad on,’ said one staff member.
‘I didn’t mind being fed, but I didn’t like how the staff put the spoon to my mouth expecting me to open it without being asked. She didn’t even ask if I wanted another mouthful. How bad is that?’ asked another.
‘Remember, this is only role play today, but it’s good that you’ve experienced these things and know how it feels for the people you support’, I told them.
At the end of the session I heard a difference in the staff, a more upbeat confidence as to what is right and what is wrong. Feeling good about how the day had gone I turned on my mobile phone and found a text from a number I didn’t recognise.
‘Sorry to bother you. I’ve been given your number to ask for some advice. I want to do some activities with a resident with dementia but the manager says ‘she is too far gone’ – her words not mine. Please help. I don’t know what to do.’
My thoughts went to my mother, hoping that she had not been written off like this in her nursing home, not that she had any mental problems. I gave some advice and told the staff member to get back to me if she needed any more. I was pleased for her that she didn’t.
Later that evening I was about to jump in the bath when my mobile rang. I looked at the caller display, hoping it was some- one who wouldn’t mind me calling them back later, but it was a number I didn’t recognise, so I answered it. It was a staff member from my training course.
‘I didn’t want to say in the class but we have a resident with serious dementia, and when it gets really bad she is very dis- traught and she shouts that she wants to die.’
‘I’m really sorry to hear that,’ I said and continued, after a silence at the other end. 'It must be very difficult for the indi- viduals in the service, and for you.’
‘And for her husband who comes to visit her. She doesn’t recognise him. I don’t understand dementia so I can’t help her. It’s all so sad.’
‘Dementia can bring two losses to loved ones,’ I told her. ‘One loss is the person to dementia and the second loss is the person who has dementia to -- ’ and before I could carry on, the staff member said, ‘Death’.
‘Have you been in post long?’ I asked. ‘Is your name down on the training list to attend a course on dementia?’
She answered ‘No’ to both questions and I advised her to discuss it with her manager and ask to be put on a course because it is very important for staff to be trained in the subject before working with people with dementia. It’s a specialist area and needs staff with the right attitude, as do all care jobs.
I was often asked for advice and if it was not possible to talk, I would suggest what to do by text, including reporting concerns to the manager or, if the manager was involved, to the Care Quality Commission. The following afternoon I rang a service to speak to one of my NVQ candidates. Another of my candidates, Layla, answered. Layla was about to come off shift, then take an individual into town in her own time – something that some staff do as there is not enough time available while on shift to do it. I hoped the manager was offering my candidate some time off in lieu, but from her response that didn’t sound very likely.
Debbie, the candidate I had rung for, was off sick with stress. I was told she had accidentally hurt an individual she was sup- porting with her newly applied false nails – something many services have a policy about. This was not good news. In the background, though, I heard a discussion about giving an indi- vidual a manicure and facial. I couldn’t help feeling cheered that someone was offering good care.
The standard of caring you should be able to expect
If you, or a relative or friend is receiving care in a nursing or care home, you are entitled to care that is consistent with the follow- ing ‘Person-Centred Values’ and to raise concerns if these are not being delivered:
• Privacy – for example, the professional staff member should knock on the door and wait for a response before opening the door.
• Choice – individuals receiving the service should, for example, be able to choose what they want to eat, or wear, or the time they get up and go to bed, how to decorate their personal space etc.
• Respect – staff should treat everyone as they would like to
be treated themselves.
• Dignity – individuals should be able to choose who they would like to support them with their personal care. The individual’s background or culture might demand, for example, that it has to be someone of the same sex as them.
• Independence – staff should enable and support individuals to do as much as they can for themselves, even if it is more efficient to do things for them.
• Individuality and identity - this means enabling individu- als to express their personal tastes and preferences, such as dressing the way they want to, or decorating their bedrooms in the way they want.
• Rights – Everyone has the right to education and freedom
of thought, conscience and religion, freedom of expression, freedom of assembly and freedom from discrimination. Also not to be subjected to torture, inhuman or degrading treatment, to be given a fair trial, and the right to respect for private and family life, home and correspondence.
• Partnership – staff should work in partnership with the individuals they support to get the individuals’ needs met.