Jackie Kennedy: A view from the patient and citizen perspective

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  • Posted:Thursday 06 December 2018

Jackie Kennedy, Personal Health Budget Holder and Disability Rights Campaigner speaks at The King's Fund 2018 annual conference. Hear how personal health budgets can be used to spend health funding to meet the needs of an individual, particularly for those with long term health conditions and disabilities, offering more choice and control over the money spent.

Transcript

My name’s Jackie Kennedy. This beautiful boy next to me is my canine partner, Kingston. I was disabled in 2008, so prior to that I’d been a police officer in London and received a traumatic brain injury in the course of my duty. Having a traumatic brain injury left me with quite brittle epilepsy, so I was in and out of hospital almost non-stop, either long term wards, many, many times in ITU. I’ve always been fiercely independent as a youngster and a teenager and when I became disabled, that disappeared overnight. I then became dependent on people to wash me, to dress me, to turn me, sometimes to feed me, sometimes to listen to me ranting on when I could be quite cantankerous sometimes and not the easiest of people.

And in 2015, I was matched with Kingston by a charity called K9 Partners. They train assistance dogs for adults with disabilities, it was actually on a training course that Kingston saved my life for the first time, and we have an eight foot lead, similar to this, quite thick, quite strong. During the course of the evening I had a seizure and it went into a bit longer and a bit longer and ended up going into status. This remarkable boy actually broke the tether, opened up the door, rushed off and got me some medical help and it made me think that my PA’s, I have to give them one of these [£10 note], a £10 note for each hour they deal with me. With Kingston, he gets one of these [dog treat]. 

So I went to my CCG and I said to them, hey look, I’ve got a way of me being independent, being creative, having a life where I’m living, not just existing as I was previously and we get to save some money, so win-win all round. And you’d be surprised, there was still quite a bit of negativity. It’s just a dog. So we done a, we had a wonderful OT come down and we had a day of all the 200 tasks that Kingston can do and what my PA can do and we worked out and we estimated that Kingston saves, just in care costs, £120,000 a year. That’s not including the extra savings with the 64 ambulances that he’d saved previously that we’d actually worked out came to £257,000 in a year. So we had some remarkable clinicians who came on board and said, we’ll give it a day and the day come when the NHS turned round and actually awarded Kingston a responsible role as my PA. 

So tonight, when I go home, from half 4 in the afternoon, to 9.30 tomorrow morning, my life is in his paws. So we go home, Kingston will come into the bathroom, he’ll help me transfer into a manual chair, physically strip me down to my underwear, I won’t get him to do it here because we were told never to frighten horses, and then we go into the bathroom and I have trouble with the right side of my body so we’ve worked out together, he gets one side of the towel, I get the other, he tugs, I tug, he tugs, I tug. So we’re dry. He will then go off and get my nightshirt, put that on and he’s constantly watching, so he can also detect, as I’ve said, with my epilepsy being brittle, 45 minutes before I have a seizure, so that enables me to get into bed, to make myself safe, to let someone know I’m going to have a seizure. Also with my diabetes, if it goes too high, too low, he’ll let me know. So, just by watching me and scent, I’ve spoken to my specialists and he will sit there and he’ll open up the fridge and he’ll get my insulin bag out and put it on the table.

The savings there, a personal health budget are the way to go and in Tower Hamlets, they’re very forward thinking so we’ve got one of the highest numbers of personal health budgets in London and since I’ve had my PHB, apart from the two nights that I spent in hospital because they thought I had sepsis, I haven’t been near a casualty whereas previously it was almost every single day. I don’t go to my GP. I call him on the phone, say can we do my review on the phone. Diabetes was so out of control that my HbC1A was 144, I’ve now got it down to 62. I’m on a way to reversing and getting rid of my diabetes. 

As I said, I had a life where every day I was planning how I was going to kill myself and I was a very considerate suicidal. I didn’t want to jump in front of a train. I was a smiling depressive, would say to everyone, yeah, yeah, yeah, I’m fine, I’m fine and I didn’t see that light at the end of the tunnel, that was gone, but thank to my PHB, thanks to it being creative, my clinicians allowing me to live my life and that’s our journey and our hope for the future is to go out and keep going out, keep changing hearts and minds and so hopefully, with Kingston by my side, we’ll get there.