"End of life care at home"

My stepmum was sadly diagnosed with a return of her cancer in December and her care and support through from diagnosis to end of life care has been exceptional.  It was her wish to be at home and to have a peaceful death. There were times where it felt like that would not be possible.  Her disease caused significant and increasing disability and my Dad is elderly and with his own health problems.  Their house was not suited to increasing mobility problems.

If one could describe a perfect death, in the end, this was what was achieved with the incredible care of many teams from NHS Borders.

Dr Cooksey, of Eyemouth Health Centre, recognised that they were sleepwalking into a crisis and arranged for an admission to hospital.  The care on the Medical Assessment Unit enabled a diagnosis to be speeded up and then care at home to be arranged. I felt he was trusted by my Dad and Stepmum and he was so kind, compassionate and efficient.  He somehow just got things moving for them.

It seems absolutely churlish to reflect on areas that could have been better - but with a genuine wish to help things be even better.....

There were significant delays in getting diagnostic tests - including one long trip for a biopsy which could not be performed because ultrasound had not been booked.   She was, by this time requiring two people to transfer in and out of a car. This then led to being re-referred but this was delayed weeks.  In the end, a hospital admission was the thing that speeded up the biopsy and diagnosis.  Given that she had had a recent CT Scan of the area for biopsy, it seems that there was a breakdown in MDT communications about how to perform the biopsy and that an ultrasound was required.

There are some elements of how my stepmum was told about her diagnosis down in the biopsy/x-ray department before being taken back to the ward and therefore without my Dad being present that could have been kinder.  She was very distraught.  They then had a meeting with the consultant and nurse to tell them together formally, but the news had already been broken in a less than ideal way. That might be something to reflect on but we appreciate the busy nature of medical assessment units.

I also wonder if everyone in the MDT knows about the Macmillan Finance advisor service?  Someone in the primary care team mentioned attendance allowance was something she would be entitled to when brain mets were first identified and her mobility was very limited but it was two months before a referral was made to the Macmillan financial advisor.  The advisor made the referral quickly but by the time she was awarded attendance allowance, her illness had advanced to a stage where she was unable to get to a bank and unable to benefit from it and had also missed out on around £400 or £500.  Not something that impacted her hugely but may be significant for others at a very challenging time of life.  Perhaps some simple awareness raising sessions encouraging early referral to Macmillan advisors would be so helpful. They do all the work - they just need the referral.

Anyway, lets focus more on the positive  aspects - because they are incredible.  Sorry for those small less positive reflections.  In the grand scheme of things they are less important, but I would feel a bit guilty if I didn't share them.

From discharge from hospital to her death was six weeks.  In that time, she was cared for by the incredible Home First team of NHS Borders. They are mainly used to support transition home to recovery from hospital.  Ordinarily, I imagine they should have stepped back after an initial period but in the circumstances, kept going. 

The district nursing team at Eyemouth Health Centre were part of the care package and this gradually increased as her needs did.

Then came the evening service, based at the Knoll Hospital in Duns.

Without exception, every person who cared for my stepmum and Dad, did so with kindness, compassion, humour and warmth.

We have no doubt these teams have an enormous workload but they took their time on every visit.  Helping my stepmum at her pace and being incredibly gentle with personal care, which got increasingly hard for her. 

We can't begin to thank everyone for their part in supporting her to be at home, in front of the fire, watching TV, and holding my Dad's hand as she died.  

I hope NHS Borders is extremely proud of what they did, and knows what a difference they made.