Post-Stroke rehabilitation at the NHS

Laura Graham continues her account of becoming a carer, following the major stroke her mother experienced in December 2012, at the age of 81

Stability brings a transfer to a specialist rehabilitation stroke unit

After spending a few quite desperate days on an intensive stroke care unit, my Mum was considered stable enough to move to a rehabilitation stroke unit at an internationally famed central London hospital.

Our first impressions were not good. It was dirty, the professor in charge breezed in and breezed out, and a Healthcare Assistant thought it “impossible” to find a beaker or a straw for my Mum so that she could have a drink. At this stage, I was still madly in love with the NHS, so excused all of this as just a busy day (which it was not).

Two long months of problems and errors

My Mum was on that unit for two very long months. I all but moved in after the second week, due to my growing concerns about her and the other patients there. Briefly, there was one evening when no meal was available, instead the patients were offered a “party pack” as the head nurse described it, (chocolate, crisps, and a white bread sandwich, the type of which was unrecognisable). Then there was a dose of antibiotics which I had highlighted should not be given due to a previous negative reaction, followed by lie after lie to cover up what they described as the “error”.

[Tweet “At this stage, I was still madly in love with the NHS, so excused all of this as just a busy day (which it was not)”]

There was under-dosing, over-dosing and simply wrong dosing of medication. An incident where the head nurse blamed a student nurse for an error when I knew the student nurse was not involved. And the form which was pre-filled to show that drinks had been given on an hourly basis when they hadn’t. I found this one at five in the afternoon, already filled in for the evening. The list goes on.

return to top

I complained – but nothing improved

With every incident, I complained. I had daily meetings with the ward Sister. She was new and claimed that she knew there were problems with the culture on the ward which she wanted to address. She also informed me that it was a well-funded and well-staffed (in numbers) ward. However, no matter what we discussed, patient safety did not improve. I developed close bonds with other family members, also concerned about the low standards on the ward. We all kept an eye out for each other’s loved ones and for the patients without relatives but eventually, I had had enough and wanted my Mum home.

My meeting with the professor in charge of the ward

I demanded to meet the professor and after some hesitation on his part he eventually agreed to meet me one evening. I recorded the conversation. He said that my mother had made no progress (which conflicted with what I had seen each day, and with what the physiotherapy team had told and shown me), and that he would support her being placed in a nursing home. For the next half an hour he avoided answering my questions about what assessments he had undertaken to reach this devastating conclusion, before he finally admitted that he had not undertaken any assessments. I insisted that he make arrangements for my Mum’s discharge to me immediately. I just knew that I had to get her out of that ward as soon as possible. It was not safe.

Hospital discharge – steep learning curve

I was advised that discharge would take three weeks. I told them I would be ready in two. An Occupational Therapist visited me at home to assess the layout in regard to wheelchair access. I had to move and get rid of furniture, rugs, and have a huge clear out in order to create space. Handrails were installed, my sofa was raised, a hospital bed with an air mattress, side bars and bumpers was delivered, as was a commode, a hospital table and a rota stand.

I also had to clear out my Mum’s clothes, which I found an emotional struggle as she loves fashion (she had been a model in her younger days) due to the impracticality and discomfort of zips and fastenings in relation to immobility. Her jeans and slacks were replaced with elastic-waisted jogging bottoms and even her underwear with her preferred back-seam had to be replaced in order to reduce the risk of sacrum pressure sores. Now, all of this seems trivial, but at the time, it felt as though my Mum’s identity was being stripped away.

return to top

The hospital social worker takes over

A hospital social worker was appointed to us. All I wanted was a way to get my Mum home, so I allowed him to handle almost everything to do with a care package. He advised that she needed four care visits per day with two carers each visit. The morning visit at 8am to help get her out of bed, washed and dressed; a second visit to help her to use the commode and into bed for an afternoon nap; followed by a further visit to help her out of bed; with a final one to helped her into bed for the night at 6.30pm. He assured me that they would be experienced carers, who would be trained in using the transfer aid, and I agreed.

A long two weeks would have been even longer without desperate action

These two weeks were the longest. I was at the hospital from breakfast until bedtime, learning as much as I could from the physiotherapy team, and keeping my Mum safe. The poor care from nurses and healthcare staff continued, but it would soon be over for us. Every evening I was getting our home ready to welcome her back. It was exhausting, but it had to be done.

Finally, the day arrived. Transport had been booked for 2pm. At midday, the social worker called to inform me that he had been unable to organise the care package so my Mum would have to stay in hospital for a few more days. I informed him that I would be bringing her home at 2pm as arranged so he had two hours to do his job properly.

Plenty of warnings about the risks of moving her from hospital

There was a welcome committee of ward staff waiting for me, all trying to reassure me that it would be better for my Mum to stay in hospital until the care package was organised. I started getting her dressed. She was coming home. The staff disappeared, just as my Mum informed me that she had fallen that morning. She had been left sitting in her chair and had fallen trying to reach for a blanket, as she was cold.

With that information ringing in my ears, a senior nurse approached to inform me that it would be far safer for my Mum to stay in hospital than to take her home without a care package! Then the social worker appeared. He wanted me to sign a disclaimer. I took the sheet of paper he spent time composing instead of organising the care package, and ripped it in two.

Ready to leave, but no transport…

2 o’clock was the scheduled time – we were ready, but the transport was not. We went to the transport lounge, where we sat for a further two and half hours before finally coming home.

Just sitting in our front room, just the two of us, was the best feeling in the world! My Mum was where she belonged and we would find a way to make it work. Fortunately, our neighbour and dear friend had completed a care course and was available that evening to help me to get her into bed. A care agency called to say that they would be working with us from the next morning. A representative from the agency came that night to go through the care plan.

Finally, our new normal could begin.

return to top
 

Notes and resources

Cardiorespiratory Physiotherapy in the community

Laura Graham is an independent researcher/writer/ consultant working on strategy and policy development in the fields of addiction recovery, mental health and carers’ issues. She is the founder of Cure the NHS-Lambeth and is passionate about improving patients’ experiences of NHS care.

You can read the first part of the story here

You can get in touch with Laura Graham by email lgrahamresearch@gmail.com.
for
The Cure the NHS – Lambeth meeting place is a closed Facebook group – it’s a safe place for people to share their experiences or to come for support. The link will open in a new browser window.

If you would like to share your experiences of caring, or comment on Laura’s, you can add a comment at the bottom of the page.

return to top

 

Make sure you don’t miss out on news from Independent Living