Tag Archives: patient centred care

The invisible patient

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The invisible patient

To the woman who grabbed her children closer to her and stared at him as he spoke too loudly in the coffee shop…I’m sad for you.

To the people who have shoved past us in the supermarket or shopping centre despite his obvious mobility limitations…I hope you’re always agile and active.

To the GP who talks about him, in front of him. Describing him like a test tube subject or experimental case study…he can hear you.

To the visitors who dwindled when he didn’t ‘get better’…we understand. It’s hard, he’s hard work but I promise that you’re missing out on laughter, joy and entertainment. You’ll always be welcome if you change your minds.

To the nurse who spoke directly to him, who asked his name, explained her treatment and demonstrated patience, kindness and humour on a busy night at an out of hours walk-in centre…thank you.

To the doctor who came out of his consultation room to meet him halfway up the corridor. Who shook his hand, waited as he got muddled with his responses and made sure to get to the bottom of all of his issues (breaking the rules about ‘one issue per visit’)…thank you.

To the carer who challenges him, who doesn’t spoonfeed him and mollycoddle him, who gives him the time and patience required to force him into action…thank you.

To the man at the supermarket who refused my offer to go ahead of us as we shuffled painfully slowly in on a busy day, telling us ‘you go first mate, I’m in no rush don’t you worry’…thank you.

To our family and friends, for the funny texts on the hardest days, for the paperwork, the doctor visits, the lifts, the Christmas gifts, the moving crew, the furniture, the understanding, the patience and the overwhelming love…thank you.

To our dad, some days (like today) drive us mad. You don’t mean to, you just require a lot more energy and patience than you ever did before. You get tired and forgetful, we get tired and grumpy, we snap and you (somehow) end up being the one to say sorry. You have a beautiful heart, a cheeky sense of humour and so much love for your friends and family. You’re doing better than you’ll ever know, and even when you’re driving us round the bend…thank you.

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Procuring a placement for AC aka finding a home for my Dad

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Procuring a placement for AC aka finding a home for my Dad

Yep that’s right ladies and gents, I’m back on my dad again. Switch off now if you’re not interested. Hopefully you are though, because he’s awesome.

So his discharge date should have been 8 May from neuro rehab, where he’s flourished – he can now eat, walk and have conversations with very little support. We’re incredibly grateful to all of the staff at West Kent Neuro Rehab Unit (The Knole Centre) in Sevenoaks. Personally, if it was appropriate, I’d hug them all, all of the time.

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However, they’ve done all they can for a man with substantial long term and permanent brain damage, so it’s time to free up the bed for someone else’s dad, mum or significant other. That was the plan anyway. Sadly, the social care system has failed my dad in meeting this aim. And so, three months past discharge date, my dad is still in rehab, where he’s understandably bored, fed up and increasingly agitated (the daily phone calls to me and my siblings have restarted).

So three months ago we met with his case manager from the local social care team. He was a great guy, who’d taken the time prior to the meeting (with us and the team at the Knole Centre) to sit with my dad and better understand his needs and capacity for various daily tasks. He explained from the off that he was an interim but that as soon as the incumbent returned from long-term sick, she’d simply pick up his notes and the case would progress seamlessly. He was wrong.

The incumbent didn’t return – obviously we don’t blame her for that and I wish her well. Instead we were placed with a new care manager, who insisted she start the process from scratch again. We took a deep breath but decided that we weren’t that far down the road, so agreed a first meeting. Despite a very clear request that it take place on a date (I gave her a list) that one of the family could attend, she booked it on a day none of us could make it. Not a good start.

My mum (superhero extraordinaire) cleared her morning and squeezed in time to attend. It did not go well. The case manager made sweeping statements about my dad’s capacity (if you understand the Mental Capacity Act, you’ll know how wrong this is), despite having never met him. She was also rude, discourteous and refused to listen to members of my dad’s current rehab team.

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Nonetheless, we took it on the chin and concentrated on my dad. Eventually, a couple of weeks later, we received a list of three homes which ‘Purchasing’ (she regularly refers to this mystical team and to monies, and very rarely to my dad as an individual, human being) had approved for him. She also forwarded some kind of tender document, which made my dad sound like a waste disposal contract.

We hurriedly booked in a  Sunday when me, my siblings and my dad could all attend to visit the three homes. They were all dementia-focussed with an average age of 80 but since we didn’t understand the system, we naively assumed they had been deemed appropriate for his needs, and picked the one Daddy seemed happiest with, and that we felt was the most caring, understanding, clean, and supportive. They assessed him the following week, and gave me a call to explain that they were really unsure about taking my dad, who has significant social and engagement needs which simply wouldn’t be met in a home for older people with progressive dementias.

And so back to the drawing board. Where we argued, (over and over and over) that a dementia-focussed home simply wasn’t for Daddy. We were supported by a report from his current team, who agreed that he needed non-dementia-focussed residential care with regular social interaction.

To speed the process up, I researched local homes myself and sent them back to the case manager. None fit the bill, two because they’re ‘out of area’ (South East London instead of North Kent) – and there’s me thinking we lived in a country proud of its integrated, joined-up and patient centred approach. What a silly sausage.

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Eventually we and my dad’s consultant suggested a place in Ashford, It’s specifically for people with long term neurological conditions or damage as the effect of an acquired brain injury. It offers further rehabilitation if appropriate, interaction, activities and trips. We all had our reservations as its location would mean fewer family visits in the week, but hopefully the engagement programme would outweigh those….Nope, it doesn’t fit within ‘Purchasing’s’ funding bracket for ‘AC’. In fact, could we top it up by £700 a week? Errrrm, no.

And so, we’re hoping it’s third time lucky. We were given yet another list (this time only two homes) and local to my dad’s home town. One was a nursing care home, and therefore completely inappropriate. One was a dementia-focussed centre. However, a very kind care manager at one of these inappropriate homes suggested a local residential home. So we dropped in unannounced, at teatime, on a Friday night. Despite our bad timing, the manager on duty was kind, introduced herself to my dad, and answered our (well-practiced) questions. The age range of patients was still older but she noted that they have 2 or 3 gentlemen in my dad’s age bracket. The building was beautiful. Every patient we met was smiling, the staff all said hello. The rooms were clean. The grounds were gorgeous. It was local. My dad said he liked it best because “I felt comfortable in there, love”.

I don’t know what will happen next, and I’ve become too battle-weary to get my hopes up. Next week we’ll send off a request for funding for this home. They’ve definitely got a room that’s available for social care funding, and fits within my dad’s ‘price bracket’ (he’s worth about £440 per week, in case you wondered). To us though, he’s priceless and while I’m sorry he’s holding up a specialist rehab bed while we do battle with social services; I’m also not letting him budge until we find a place where he’s happy.

He’s not a contract, he’s not a number, and he’s not just some ‘thick’ brain damaged patient. He’s our Daddy and he has social care needs, yes; but more importantly he has a personality, a sense of humour, a huge heart, and a right to live in a friendly, fun, caring and supportive environment.

We won’t rest (literally in most of our cases) until we see him settled somewhere, waving goodbye after we visit, with a huge smile on his face. And after that, we’ll write a reeeeeeeeeally comprehensive complaint…