Sunday, 20 October 2013

What He Doesn't Know

She is 85, frightened and confused in her increasingly rare lucid moments.  Her husband struggles to care for her, his days a constant battle of negotiating, reminding, coercing.  They both have an overwhelming sense of frustration.  And guilt.

Their daughter has done well, with a successful career, a family and a large house.  150 miles away.  They've thought of moving but they have always lived in this village, and neither can face a new environment.

The carer comes twice a day, mainly to help with bathing and dressing.  The visits are short, but most days this is the only conversation he can look forward to. Lately the carers change more.  They seem to be quicker, often talking about where they need to be next.  They come at 9am, when his wife is often asleep after her increasingly disturbed nights.  They've been told they can ask for their needs to be reassessed, but they seem so busy and he doesn't like to trouble anyone.

The district nurse used to visit when he had a leg ulcer.  3 times a week.  They asked a lot of questions, seemed genuinely interested in his nutrition and mobility. His wife wasn't 'on their books' but she enjoyed their visits.  His leg ulcer healed 3 months ago, and he 'isn't housebound' so he's been 'discharged.' He is mobile but wishes he could leave the house, but she gets distressed whenever he leaves.  Tesco delivers their shopping now.  The chemist delivers their medication.

The last time he saw his GP was when his wife had her dementia review.  Her blood pressure was fine, she had normal blood tests and showed no signs of depression.  There seemed to be a fixed set of questions to run through.  He had asked about carers and the GP had requested a social care assessment. That was when the carers started coming.  Things were worse now, and he felt less well himself but he'd probably wait and bring it up at the next review.  He wasn't sure when that would be.  He had received a letter offering a flu jab appointment.  He might ask then if he was able to get someone to look after his wife.

Anyway, if there was anything else anyone could do they'd probably have done it.  The carer would have mentioned it, wouldn't they?  Or the district nurse might have expressed her concerns to the GP.  The GP might have called in on his 'rounds'.  Dr Robins would have done, but he retired 10 years ago and he's not sure who the new GPs are now.  When his wife had a water infection recently they'd sorted a prescription over the phone.  There is a practice leaflet but so much seems to be on a practice website nowadays.  Not really much use without a computer.

What he doesn't know is that the carer doesn't know who his GP is either, or which
 practice he is registered with. The district nurse doesn't have access to his full GP record, and hasn't had a face to face conversation about anyone with his GP for 8 months.  The district nurses moved out of the practice into a new 'hub' then, and their new contract means they have a limited number of visits and only to those who are medically housebound.  They aren't on the GP 'radar' because their medications aren't up for review yet, and their QOF reviews aren't due for 4 months.

He's married yet lonely.  They have carers yet aren't truly cared for.  And their story will be familiar to many.

This blog was written to raise awareness and to reflect discussions in the CCG members' meeting where GPs discussed the importance of the primary care team, communication and the lack of engagement with community teams.  This is a key challenge to the CCG and emphasises the importance of the members and the role of the practice/practice team.


  1. This is really moving but scarily probably not unusual. Too many older people don't want to, or don't know how to, ask for help. OPAAL is the Older People's Advocacy Alliance, the strategic lead for independent advocacy for older people across the UK. Isn't it time more independent advocacy was commissioned in circumstances like those described? Isn't it time advocacy was on the radar? An advocate can be the link that ensures agencies start talking to each other to better support those that need support.

  2. A picture uncannily close to a couple I knew until they both died a year ago, and one which will become more common in various forms. Moving - and moving me to what? One thing we can do is improve continuity, make it much easier for patients to contact a named GP - which is good for GPs too.

  3. This piece is really moving and highlights how fragmented, confusing and unfit for purpose our current health and social care system it. I'm currently a management trainee on the NHS Graduate Scheme, working on integrated care strategy and am shocked on a daily basis at how, in the 21st century, we still cannot provide easy to navigate, joined-up care. There seems to be a lot of talk of integrated care but we need to start making it happen sooner.