TREATMENT IN TODAY’S NHS

This is what treatment is like in an NHS hospital today
This is what happened to my sister in a semi-privatised, squeezed by New Labour and Margaret Thatcher, we’re so proud of our standard of excellence we are applying for Foundation Hospital status hospital
This is what happened to my sister, a lovely 48-year-old woman with a mild learning difficulty and a few simple special needs, a person and not a statistic, a person and not a collection of symptoms
This is what happened to her in today’s NHS

This is not a tragic story, this is a story with a reasonably happy ending
The patient didn’t die, she didn’t lose a leg
And believe me, for that I am truly, indescribably grateful
But the fact is, she was treated like shit
And I, as her carer and next of kin, was treated like shit
And T, her partner, another lovely person with a few problems of his own, was also treated like shit

And I’m sorry, it is simply not good enough to tell me, as if I didn’t already know
That nurses are undervalued and demoralised, and that doctors are overworked
And don’t tell me that the only way out of this mess is to create a two-tier medical system
Where the people on the top feel ever more pressurised and the people on the bottom feel worse and worse

Something is very wrong with a system where it took a week to see the consultant to find out how ill my sister had been
Where the only friendly nurse on the ward didn’t have a clue about how to organise for me to come in and see the consultant
Where I only needed to speak to the consultant at all because I was made to feel like an irritating waste of time when I tried to speak to the other doctors to find out what was wrong
Where my sister’s drip was left in for four hours instead of half an hour and her requests to have it removed were repeatedly ignored
Where her bandage was soaked through with yellow pus and the staff claimed they were so overworked they couldn’t spare ten minutes all day to come and change it

Maybe the doctors and nurses and social workers ignored me because I put on my polite, respectable, would-be middle-class persona
The site manager came running after T got angry on the phone
She promised that my sister’s needs would be attended to, as T and I did the soft cop, hard cop routine on her
But actually things didn’t improve much
The next week, the social workers put the phone down on T when he got angry after being fobbed off once too often
So then we had to do the reasonable relative, unreasonable relative act again
And it still took another two days for the creaking system to lumber into action

And that was not because they responded to our pleas and anxiety
It was because I put aside my own work, yet again
And spent three days on the phone
And was exhausted and upset and humiliated by a barrage of different departments
Each of which had some responsibility, but not all the responsibility
(That would be too simple)
To get my sister’s home care package restarted when she left hospital

Tony Blair obviously induced such a climate of fear that only resorting to tactics of threat and retribution produced any results at all
How many places do you slip down the league table if you take away a patient’s food before they finish eating, or refuse to help them wash?
What happens to your score if you lose their paperwork in the system of ever-burgeoning bureaucracy?
How many millions are being wasted on perilous computer systems when the cure is re-installing some humanity?
I suppose that making people pay for their home care earns a few measly quid for the government to spend on their shiny new toys, and their war machines, and updating a few nuclear weapons

I phoned my friend M., a disability activist, to ask her what I should do to get my sister’s needs met
‘Be fierce on her behalf,’ she said
‘I’ve tried that,’ I said
‘Don’t give up,’ she said, so I tried not to, though being persistent in the face of indifference and hostility takes it out of a person

When I told my friend J that they had not washed my sister for several days, she was utterly unsurprised
‘I have two friends whose elderly mothers weren’t washed for a week,’ she told me
So I suppose I should be grateful that they finally washed the blood out of my sister’s hair from the cut she sustained when she fell unconscious on her bathroom floor

The second time I tried to see the consultant, I had to take my son into Children’s A and E with an asthma attack
‘Why didn’t you take him to the GP?’ asked the nurse on the phone from my sister’s ward, as I explained that I was downstairs and wondered if I could possibly see the consultant later or speak to him on the phone
Like it’s any of her business
Like I’m an incompetent mother who has not been through this a dozen times before
Like I’m an incompetent, thoughtless no-brainer, who is only intent on squandering the hospital’s valuable resources, which I am also doing by attempting to impinge myself on the consciousness of the consultant
‘The consultant’s a very busy man, you know,’ they keep telling me, as I phone from A and E every 15 minutes to try and make sure I don’t miss him
Like I’m a lazy cow sitting around down here twiddling my thumbs while I try to discuss preventers and relievers and puffers and peak flows and nebulisers and steroids with the paediatrician while my son goes paler and paler and tells me his chest hurts
Like I wouldn’t prefer to be upstairs on my sister’s ward discussing her discharge instead of sitting downstairs discussing my son’s admission

How many times should you have to tell medical staff that your relative has a learning difficulty before they say, ‘Would you like to act as her advocate?’
If she was deaf, wouldn’t they ask someone to sign for her?
If she spoke Turkish or Bengali or French would they not call in an interpreter?
If she was in a wheelchair would they not consider that maybe a bit of extra help was required to deal with her special needs?

Yet another waste of time, putting in a complaint
Meeting with the ward Matron some months later
She tells me there has only been one other patient with mild learning difficulties on the ward in the last several years
So there is no point giving special training for dealing with such people, as the staff would forget by the time the next one came along
What about the patient I saw on the ward who was clearly suffering from dementia
The nurses treated him most dismissively
Do you only get one of those every few years as well?
Surely the point is to make things friendlier for all patients, I said, so that people with mild learning difficulties will also benefit

I can assure you, she said, that all our nurses do care about all the patients
The constraints you are describing is what it is like operating in today’s NHS
If we are short-staffed, we do have a pool in the hospital, we do see if we can shift nurses round from other wards, we contact agencies
But sometimes there isn’t anybody
If we are short-staffed, we have to prioritise
Some patients have to be monitored every half hour or hour
We have to administer some complicated medical procedures
If we judge something is not so urgent, we have to leave it
If the dressing is in place, the leg is protected
If there is a bit of oozing, it is okay to leave it

But what if there is a lot of oozing, if there is yellow pus all over the sheets?
Long, long pause
It might only take ten minutes, but if you are very busy with other things, it can be a difficult thing to fit in

The Matron promised to get back to me
She never did
She promised that they would draft out a new leaflet to give to relatives, and she would send it to me for comments
She never did
She promised to look into the hospital’s policy for patients with learning difficulties
She never did

This is what treatment is like in today’s NHS

copyright Gail Chester