My Aunt recently suffered a haemorrhagic stroke, with high blood pressure the major contributory factor. She seemed to recover well. An 8 week journey - critical care, ward care and onto further rehabilitation in a care home. She finally returned to her own home on the 6th January2016.

She passed all the tests. She could master the stairs in the care home which was important because she had 12 of those to negotiate at home. She walked well with her zimmer frame and ongoing physiotherapy at home would hopefully lead to 2 sticks as a walking aid , maybe just 1!

She was reasonably confident in the 'catering department'. Tea, coffee, toast and even the advanced class preparing a bacon sandwich. All tested at the care home and double checked in her own home. Personal hygiene - passed that test with flying colours. The care Assistants would have to get up very early to catch her out on that one!

So with all boxes ticked in the immediate rehabilitation requirement category, my aunt was ready to go home. She couldn't wait and talked about her 'new' dream which would see her independently getting on the bus to go shopping in her local town. She accepted that her last trip as a driver in her little Vauxhall Corsa made just the day before her stroke was indeed, her last. Life would be different now, but she would learn to organise and adapt to the 'new' way, because most importantly she was back in control, independent.

There was a huge effort which would now 'gear' up to make this independence truly possible. Carers would visit 3 times a day? “No” - my aunt insisted twice daily would be more than adequate. Agreed.

The occupational therapist would visit at least once a week with the physiotherapist. They would work through some of the unresolved issues associated with memory impairment and mobility, over the forthcoming weeks? “OK, if I must.” I would take care of any appointments my Aunt may need to attend. I would drive the 130 miles to ensure I was with her. I mention the 130 miles because this is the distance between my Aunts home and mine. My Sister and I are her main advocates in the sense that we determined our responsibility (as one former nurse and one practising nurse) to be that of ensuring that her 'care' would lead to the outcome that our Aunt dreamed of.

Recovery, return home, independence, the bus trip, to stay well.

To that end we were with her all the way through. So between 19th November 2015 and 11th Feb 2016 we had made approximately 25 trips, so just over 3,000 miles. We tried to provide each and every agency involved with her care, with all the information they required, to assist them in decisions they would make about treatment, care plans, discharge planning, ongoing 'rehabilitation'. It has to be said that this in itself was an uphill battle. We hoped that the information would be shared so that a holistic care approach would be developed. My Aunt would recover as a 'whole' person supported by her Stroke Outreach Team.

Just to remind you. It was very high blood pressure which resulted in a stroke, which hospitalised my Aunt. Once my Aunt moved out of Hospital and into a 'rehabilitation' bed within a care home, measurement of her blood pressure stopped. So this was just 3 weeks post stroke. It was measured only when we requested and re requested. Should monitoring blood pressure have been a part of good discharge planning?

A repeat MRI scan to assess stroke damage and improvement should take place 4 weeks post stroke, we were advised by her Dr .We reminded the Stroke outreach team at the care home that this was still not booked. Should I flag up discharge planning here? An appointment was finally made for the 1st week during January (about 7 weeks post stroke) and then cancelled, due to technical problems. No one re booked. I questioned a staff member at the Care Home and I was advised to take responsibility for that myself as my Aunt was now ready for discharge home.

My Aunt arrived home and was grateful that 2 hand rails now guided her up those stairs. In addition, a seat had been placed in her rather small bathroom and a raised seat with handles enthroned her loo! Ahh well, needs must. The kindly OT had settled her in, and told her about the new keysafe installed for the various callers to let themselves in each day. Wonder how long that will last, I remember thinking.

And so the 'new' life began. Each agency arrived to do their 'bit'. All were very kind my Aunt reported. But she began to dislike the 'intrusion' Each visit required a list of questions to be answered and recorded in her 'file'. Then came more assessments and now she was feeling 'interrogated', and a visitor in her own home.

My sister and I explained that this was all about trying to 'catch that bus' that my aunt dreamed of. But we could see that her anxiety levels were such that there was a danger all this 'rehabilitation' would backfire.

What was her blood pressure doing? Was anyone measuring it? No.

Did her GP receive her discharge letter outlining all that had happened and all that would happen? Did he visit her just once maybe to see how one of his flock was getting on, check medication and supply of. Possibly check my Aunt's Blood Pressure? No

My Aunt was concerned about her blood pressure. She understood what the repercussions could be. We appreciated her request to let her try to manage this situation. So we asked her to call her GP , we wrote it down in a diary we had given her to remind her and with 1 more prompt she did, and a district nurse was booked to visit. The Nurse recorded her blood pressure. My Aunt asked her if she might visit again. No, there was no plan for that.

Meanwhile visits from each of the other agencies continued, without Blood pressure recordings. My aunt knew that the care package that had been arranged would continue for 6 weeks and then she planned to stop the daily visits by care assistants. She insisted she felt fine and was doing everything herself before the care assistants arrived. Typical of my Aunt I thought.

However as we entered the 3rd week of her home care plan I received a call from social services wanting to arrange a meeting with my aunt at her home to carry out a financial assessment with a view to a longer term care plan.

“Have you spoken to my aunt about this?” I asked. “No my job is just to book the visit “I was told. I had to speak with a facilitator if I required any other information. So I did. Apparently he was to visit my aunt before the financial assessment, to do another assessment, to decide if she needed a financial assessment…..

I told my Aunt about these meetings and I could tell she was unhappy and a little upset. I said I would be with her and that I had arranged the meeting to take place on the day of the MRI scan which would now finally take place on the 11th Feb (12 weeks post stroke)

That was going to be a busy week for my aunt, all her usual visits with an extra couple thrown in by the OT who wanted to assess my Aunt's lunchtime cooking skills and also take her a walk to the nearby shops to check out her 'money handling' abilities.

Gosh, was anyone checking her blood pressure? No

The evening before my Aunt's busy day with MRI and Social Services I received a call from my mother. My aunt was on her way to hospital she had suffered another stroke. My sister finished her late shift on ITU and drove 80miles to be with our aunt. She arrived at the emergency department at 11.30pm, my aunt was in Resus, very ill and unlikely to recover. The scans confirmed the very poor prognosis.

Was anyone checking her blood pressure? They were now.

I would not suggest that regularly monitoring my aunt's blood pressure would definitely have changed our sad situation. But, it might have done.

My Aunt had told her OT she had felt numbness in her face which had passed. The OT advised her to call the GP or emergency 'if ', it happened again. This was apparently just the day before her 2nd stroke.

A part of what this dear lady had lost through stroke damage was her ability to initiate new actions. Get up, dress, prepare food, housework, all fine. Think about calling her GP, very unlikely. Cognitive impairment is often masked by the stroke victim almost bluffing their way through each day. But it has the potential to eventually isolate a seemingly well recovered individual and ultimately threaten their physical well-being.

My aunt had many carers visiting each day to look after a bit of her .The time, the effort, the cost must have been significant. But the underlying cause for my Aunt's stroke was high blood pressure, and no one saw the need to check it, because that wasn't their job.

My aunt couldn't drive her car after her first stroke. Now after a second stroke she can't open her eyes.

• What is the learning? Put yourself in my shoes and tell me what would you do?
• Would you look at how patient centred the discharge planning really is?
• Would you look at the content of the discharge letter that is sent to the GP?
• Would you think about physician intervention for stroke patients discharged home as a requirement in the goal to prevent readmission?
• Would you consider additional training for the stroke outreach teams covering the basic skills of blood pressure monitoring and reporting?
• Would you examine the working relationship, the 'connect' between the Hospital Care team, the stroke outreach team and the GP?

Would you accept that there is always more to do so don’t tick the box?

I would

Author - Elizabeth Meatyard - Leadership Associate, Kings Fund and former nurse. The founder of the Dining Companions programme at Kingston Hospital Foundation Trust @emeatyard1