Above and beyond

This is a guest blog from our Executive Director of Support and Development Anna McEwen who writes:

Yesterday I visited Paula and Ian who live in Beckton, London.  It was like going to visit old friends as I’ve known them for many years in different roles.

Ian moved in to live with Paula and her family in 2000 and Paula has gone through many incarnations of regulation including registering as a small care home before joining Newham Shared Lives scheme when it was established in 2009.  When Ian first moved in, after his former foster mother died, Paula’s children were both under 5 – now her daughter is a student nurse and her son has just begun a scholarship playing basketball in America.

It was wonderful to see them both, but this time the purpose of my visit was to hear from Ian’s health journey of the last year.

It was June 2015 when Ian began to feel unwell, he had a high temperature and wasn’t eating – something that is really unusual for him.  So, Paula took him to the GP who initially thought it was a viral infection. When he got no better, Paula took Ian back to the GP who sent him for blood tests.  Still no improvement and Paula knew something was badly wrong by now, Ian was tired, lethargic and his temperature kept spiking.  The next time he went back to the GP he was fast tracked to hospital where he underwent tests in A&E before being admitted.  He ended up staying in hospital for one week during which time he had an endoscopy operation to unblock a bile duct.  Paula spent all day every day in hospital with Ian who told me it was a bit scary being in hospital.  Paula was there from 9am until 8:30pm each day so that Ian knew that he just had to sleep for the night and then she’d be back there for him.

Paula and Ian

Once the operation had been done, Ian initially felt much better and they both had a sense of relief.  Unfortunately, they were then told the news that the tissue removed in the operation and sent for biopsy was cancerous.

For the next couple of months, Ian went through a number of tests and scans and was then referred to a specialist at the Royal London hospital.  Paula talks about the consultant being a wonderful man who always took the time to talk to Ian, explain things to help Ian understand and then performed the major operation to remove Ian’s gall bladder and tip of the pancreas.  Again Paula spent each day in the hospital with Ian throughout the 10 days he stayed there.  He was initially very weak after the 5 hour operation and spent time in intensive care, but the hospital put in extra support for Ian in those early days.

Ian was also visited and blessed in hospital by Father Bob, from Ian’s local catholic church, who has been supporting Ian and other disabled people to visit Lourdes each summer for the last 15 years.

Following the operation, Ian returned home but had to go through six months of precautionary chemotherapy.  So, for three weeks out of every month Ian and Paula were backwards and forwards to St Barts every week.  The side effects of the chemo were hard on Ian, but Paula was there observing any changes or concerns and raising these with the medical staff so that treatment could be adjusted as necessary.

During this six months, Ian and Paula got to know London like never before. Many a day they’d be told they’d have to wait several hours before treatment could start.  So together they’d go and explore, they found special cafes, gardens with fountains, discovered how to get into St Pauls for free, visit museums or art galleries and developed a good relationship with the owner of an Italian restaurant near the hospital where they’d often escape.

Paula said that what made the whole time bearable was the people they met, the compassionate, competent and caring medical staff in the hospitals who took the time out to make sure that Ian was involved in his care and build his trust; the other patients in the cancer club – one of whom Ian took a shine to and was convinced she was on the telly (he’s a huge soap addict) after she’d sat opposite him for treatment a few times, turned out she actually was an actress and went out of her way to spend some time with Ian when they were in at the same time; and those people they met in the cafes, gardens and restaurants where they spent many many hours.

Finally, in June 2016 just about one year since the journey had started, Ian was given the all clear, no longer attending treatment and just has to go back for a check up every three months.

Paula said that the journey they’ve been on together has brought the two of them closer than ever before, although they were always very close.  She was there every step of the way, making sure that Ian understood what was happening, advocating for him, noticing any changes during his treatment, and persevering with Ian’s estranged family to get consent for the operation which would have been considerably delayed otherwise.

The medical staff didn’t know what a Shared Lives carer was at first, but all commented on what a great support Paula was to Ian, providing consistency and reassurance throughout.  Ian said that it was scary being in and out of hospital but he felt better knowing that Paula was there.  He’s much happier about life again and is back to a normal routine doing the things he enjoys.  He is so much a part of that family that Paula didn’t have to think twice about going over and above what she is paid for and giving Ian the support that she’d have given any member of her family in the same situation.  This really is the difference that Shared Lives makes, Shared Lives carers go above and beyond on a daily basis but pull out all the stops when it really counts.