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Friday, 23 February 2018

Feelings of an ad hoc carer and frustrated professional

Just now I'm aware my mum is undergoing a endoscopy and I'm at home after spending a few days with her. In my earlier post about the NHS in November 2017 I laid out my views of what we were experiencing.  
Now it's time for an update and perhaps less positive reading.
After discharge from a 3 week stay in a rehabilitation bed the Friday before Christmas mum was experiencing trouble with reflux from what we eventually discovered (in a post Christmas telephone call with a GP) was a sliding hiatus hernia. This was known about in hospital yet no mention of it was ever made.
Mum has gradually regained her mobility and with support from the family and neighbours was managing just about at home. 
The big problem has been to get anyone to take her painful regurgitation and reflux seriously, along with her weight loss. For a serious cook like mum, who enjoyed a varied diet and particularly going out to eat the reduction in appetite and feelings of hunger have been a depressing downward spiral with no sign of improvement. 
The oral medicines prescribed to improve the situation were having no chance to work.
We've tried all sorts of things; bed head end elevated, mum using the internet to make sure she was using NHS advice for her diet and the variety of medication that was promised to make a difference.
Only this week have we got a GP to call round; the vomiting of almost every fluid and food mum has tried to take was largely ignored because its all 'infection'. Mum has lost half a stone in recent weeks and we believed we were approaching a crisis point that could surely have been anticipated with better community support. The community nurses who visited shortly after discharge told mum they'd keep an eye on her; though hearing impaired mum got the (correct) impression she'd not see them again. 
The senior GP who mum got through to thought she was calling her rehab place; we'd made it clear to the surgery that mum was home...
So between family members and her marvelous neighbours we've tried to find attractive foods and fluids; my catering experience helped here though only marginally.
This week, having been forced to take a frail and low energy mum to the local hospital for a blood test we reached crisis point. The 111 doctor called to say her bloods deranged and needs to go to hospital. So mum is now back in hospital and having her endoscopy. We'd considered getting a private consultation to see if we could get someone to take notice. 
For us, and my experience in the last week this seems unnecessary; felt like trying to keep mum out of hospital (understandable in some way given recent news) though at the expense of ambulance crews and long (overnight) waits in A & E. And we had more than one nurse advocate trying to get help for her. 
Where is the multi professional review and support for older people in the community?
Were mum without family and her support network I dread to think what would have happened. 
It's frustrating and we have some inside knowledge that you would expect to help get us further; it's frightening too.
Right now I have to trust my hospital colleagues and keep faith in the system overall; for Mum and as so many other carers have to do day after day.
As I finishing writing this mum's GP surgery have called me - they're trying to get hold of mum and wondered where she was - her blood results need rechecking... they are surprised (and relieved) she's already in hospital... where's the communication? 

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