Thursday, 5 February 2015

The Gloves are Off

With the General Election coming up I find our recent experiences with the NHS even more relevant.

In the past year we have lost our long standing psychiatrist, our ADHD nurse, our dietician, our physio and experienced ever worsening care. 

Despite having a child with complex needs on ADHD medication with a Team Around the Child system in process only the physio got replaced - and by someone who neither knows our family or cares two hoots. Obviously she knows better in five minutes than professionals who have worked with my kids for 5+ years though, which is just as well as few kids with a socio-communication disorder can bypass the years (yes, years) needed to build up a relationship to share their feelings and concerns. (And of course it cuts to the chase and saves oodles of time which would be wasted discussing the case with a parent who is obviously clueless having lived in a bubble for years not caring night and day for their kids.)

Roulette Wheel by Hakan Dahlstrom

It's also true that sadly many dieticians are less clued up than parents when it comes to feeding children with food allergies. Unless you win the game of Russian Roulette and get someone who "gets" it, or you are deemed worthy of tertiary level support you are probably better off saving the NHS some money and muddling through. After all, nutritional bloods are only a rough guide, aren't they? Definitely best ignored, it's a can of worms you really don't want to open.

Clinic letters rarely get sent to the right country, let alone the right hospital - and the jackpot of the letters actually reaching the right consultant is just pie in the sky....  In their defence whilst typing clinic letters in a distant room in India, the Australian hospital equivalent did come top of the list when Googled, so it was a pretty good hunch to send them there. Which is probably why our GP Practice thought it would be more accurate to take a wild stab in the dark and make up the details for our Summary Care Records. Inspired. The GP's secretaries do actually speak good English, but you do need a clinic letter to work from when writing notes, a "hedge your bets now" approach is not much wide of the mark because when the clinic letters DO arrive they are woefully inadequate at best or utterly incorrect at worst (medication errors, dosage errors, diagnosis errors, treatment errors) so that reading them is probably a waste of time.

Then there was the time when H's records in London were merged with another child with the same name. Who also lives in the same town. This other child was in fact a day younger, but of course it was so more likely that this was an error, and it was the same child. With a really common name. 

Of course it was. 
But it was just as well we didn't travel to London for the various admissions that were booked in my son's name, as we would have wasted the train fares. And my time. 

We've seen secretaries to key consultants change faster than Mr Ben in a hurry (sorry, 70's kids' TV joke) and almost none of them have English as a first language. I suspect they are paid a pitiful amount with no incentive to stay - certainly the food there is not a reason to stick around. The local consultants have more luck retaining their secretaries, I think they have discovered some secret survival strategy - which mostly involves not answering the phone.

Our local hospital has got money saving down to a fine art. One department doesn't issue review appointments, their policy is to wait and see if the patient remembers and calls! Mind you they probably halve their waiting lists this way and should win some award from the government. The children's department adds a few months to the requested time each time a review is sent out, then a couple of months later it's bumped onwards a few more. And physiotherapy have a budget-cutting policy to be proud of, automatically discharging any child not seen within a year. (Which is even more cunning when no review is sent out during that time, and when you call to request one you need to go Back to Basics and start again. With the four month wait to be seen.) No wonder their A and E is first class,  so much money saved from elsewhere! The only flaw in this policy is that with no out of hours care, no Walk In, and over stretched GPs A and E is just about the only port of call. So it needs to be good.....

Those without diagnoses, with a blurred collection of symptoms and partial answers are those who slip through the net at times like this. We've devalued and under-resourced our NHS in the name of good housekeeping. Permitted too many from outside the UK to access it for free, turned it on its head and shaken it up to see what falls out and left those who have least contact with the chronically sick to run it and hold the purse strings. 

But this isn't about politics. Or about funding. 

It's about people. 
About the elderly, about children - MY children, and about you and me. Not wearing short-sighted goggles and thinking tomorrow will never come.

And it's about responsibility, and respect. About caring and CARE. 

Because right now we are stockpiling enough time-bombs for the future to blow the NHS wide apart. Let's hope the people with responsibility remember to retain our respect and show some care.

The gloves are off. 
I just don't know whether I'm sitting in the dark holding a cup of tea in despair or gearing up for a fight. 

"Boxing Gloves" by Julia Manzerova


  1. Kate, I feel your pain and love the way you've expressed your most recent frustrations. We've re-donned our boxing gloves after retiring them last year as our local once again needs 7 bells knocked out of it to get them to pay even the tiniest bit of attention to our "child in need". So, whichever you choose, darkened room or NHS battle, know I'm right there by your side! Rxxx

  2. I agree Kate, it is a matter of care and respect, sadly it is few and far between. We have experienced it from both sides, our oldest daughter has autism and we have had no support or help medically. My other half works as a paramedic and daily sees such minor call out's (can you believe someone would dial 999 because they didn't want to give Calpol to their 2 year old!) and this seems to suck so much time away from genuine calls. This is indicative of the NHS I think, while we have doctor's available who (if you are lucky) will listen to your concerns and take action, the doctors, nurses, and paramedics are overstretched and doing 14+ hour shifts - it is so hard to work efficiently sustaining this! Something does need to change as the service has lost it's caring nature, for it's staff and it's patients.

    1. I know - we've sat in A and E waiting for a broken nose and split lip to get seen whilst parents bring in kids with a sore knee as they fell over.... but here there are no out of hours options, no Walk Ins nothing which does make it hard. The appalling communication wastes SO much time and money, and the inaccuracies on Summary Care Records are so dangerous.

  3. It is frightening, I hope things improve for you. We had to wait six months for a hospital and my son being 17 is no longer considered a child..and then we still haven't really got any answers. Something needs to change

  4. That's so bad that your son's details got merged with another child....good luck with your ongoing fight. I totally agree that things need to change.

  5. it sounds like such a constant battle hopefully one day there will be families who get the help they deserve without the stressful struggles , things certainly need to change, best of luck x

  6. I'm not surprised you're angry, with the NHS in such a poor state. My friend is a child psychologist and she's had to leave to set up a private practice - the conditions she was expected to work in were unsafe, as she had far too many cases and not enough support/supervision, after the cuts. She was devastated to have to leave.

  7. What a catalogue of errors and poor treatment, and sadly yours is a common story. Most people I speak to would be happy to have an additional charge in their tax, say £10 a month, if it was used only for the NHS. Politicians should take notice of the fact that we love our NHS and we want it helped to be great again, even if it costs us a bit. I feel sorry for the staff who are left offering a lower level of care than they would like too, but no alternative.

  8. Argh, this gets me so mad so I can only imagine how you're feeling. So sorry you're having to deal with his hunny.
    I'm always being told my aunt who's worked for the NHS for over 30 years that going private is the way forward but its all money money money!
    I really hope things improve for you lovey. Will be thinking of you.

    Charlotte x

  9. Stories like this are becoming all too common, we are so lucky to have an NHS in this country I really hope they can find their way back with financial support they need

  10. This is terrible! No wonder you are angry. Luckily I've never had any problem with the NHS and love that we have it but it is so worrying when you hear about things like this.

  11. I am sorry you have so much anger towards NHS right now... they struggle and are failing a lot of people all over the country. We have an option to book a GP appointments on the day, call at 8am and book... by 8:02am all spaces for the day are gone... no point going to book it in person as the "phone people" have a priority... and if I want to book a standard appointment - waiting time is around 10 days... how good is that if I have a sick child now, today?!? I am angry too :-(

  12. It is so frustrating for you all. It sounds like a constant battle, which it shouldn't be. I can understand your anger. I really hope that things start to improve for you all.

  13. It's a shame when what is a fantastic concept in theory, and has delivered well for years, is being torn apart due to policies and politics. Not to mention wasted finances and abuse of the system. Let us hope, for all our sakes, the NHS survives and flourishes in its original format for years to come.

  14. It sounds like such a abttle and I really hope things improve. It's such a shame that your fanily is being let down by the system. x

  15. It's a real shame to hear about your recent experiences. I hope it does get better for you and your family. I agree that care must be centred around the person involved and their needs and wishes (and those of their family) are respected.


Many thanks for taking the time to comment, I really value your responses.

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