A few months ago I started negotiating moving my care package from a Direct Payment to a Personal Health Budget. Previously my package received funding from both Adult Social Care and Continuing Healthcare as I qualified for both. The arrangement meant Adult Social Care took a payment (or “Section 72 transfer”) directly from CHC, in layman’s terms “shuffling money from one box into another”.

The arrangement was as unique then as it is now, as I’m actually the 20th person in the UK to be moved on to a Personal Health Budget. Leeds is one of the few areas piloting this new scheme, which aims to give people with long-term conditions and disabilities greater choice and control over the healthcare and support they receive.

I’ve always been happy with my Direct Payment as it has met my fundamental need – 24 hour care. Recently I’ve found myself needing more flexibility than it can afford and felt it needed updating across four key areas (click on each to expand for details):

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[accordion title=”PA Hourly Rate”]This hadn’t increased since April 2010, not even inline with inflation. After showing the review team the stats, I proved (since the start of my Direct Payment) my PAs have taken a 9% cut in real terms when compared with Minimum Wage, Public Sector wages and UK inflation increases. Had my Direct Payment rate stayed in place for another 2 years I would technically be illegal as an employer paying below future minimum wage rates. This fixed rate was also making my job of recruiting and retaining PAs increasingly more difficult, average contract lengths dropping significantly from 18 months in 2007 to 8 months today.[/accordion]
[accordion title=”Physiotherapy”]Over the last year CHC funding has afforded me several replacement items that have made my life distinctly easier: a new bed, backrest, revamped standing frame and (most crucially) ongoing fortnightly physio. You cannot possibly undervalue the positive effect that even one hour can have on both the pain levels in my body and my posture. Since this started back in February I’ve been able to sleep better, regained better balance and movement and don’t need require anywhere near as much moving around in my chair during the day from my PAs for comfort. My spasms have also noticeably dropped.[/accordion]
[accordion title=”PA Healthcare Training”]My regular alternate evening district nursing visits are becoming increasingly unpredictable with timings as the service is being stretched with fewer staff covering a larger geographical area. I also don’t want to have to rely on my parents being around whenever I want to go on holiday (I think I can just about remember what one of those is, it’s been a while!). (No offence mum!) They aren’t getting any younger so I’d like to know that I can go away either by myself or with friends when I want (and can afford!) to in future or when I’m away on business. Most importantly if I’m at home and the nurses can’t get to me in an emergency, it’s sensible to have another backup option.[/accordion]
[accordion title=”Backup”]Relying on agency support for times when none of my PAs can work is something I’ve always been loathed to do. The rates are higher, I have little control over who they send, and in truth over the last few years they haven’t been able to respond to my needs quickly enough – even when giving 2 weeks notice. With this package I wanted an ultimate fallback option of one dedicated agency that I could call on with 48 hours notice. Having said that I’m building up my own bank of backup PAs which may nullify this need – fingers crossed.[/accordion]
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In short they agreed with these requests above and took me through the new support plan. This was like chalk and cheese when you compare it with the Adult Social Care version, far more comprehensive.

What’s changing?

The new hourly rate (for healthcare trained PAs) is a whopping £2.55 per hour higher than previously, which as you can imagine all of my current crop were eager to jump at the chance of swapping to. As a trade off they do have to complete training in a number of areas including an Online Induction; Hand Hygiene; Handling Medication; Moving and Handling Theory, Assessment and Practice and Safeguarding Vulnerable Adults. They also get paid to do that training. Funding now includes allocations for physio, DBS checks, advertising,insurance, protective equipment, even envelopes and stamps. So it will be interesting to see how this goes over the next year to see if I do indeed get any more flexibility and stability from it.

My initial meeting with the Leeds CIL independent living adviser was quite amusing. Being on their management board and actively involved in developing several of their products over the years, it tickled me when I was shown the new employment contract template as it looked incredibly similar (it was, they based it on mine!), as did several of the costing breakdowns [that I’d helped put together].

It’s possible that my positive experience this far may be due to a number of factors:

• I can argue eloquently enough for myself
• my position on the Leeds CIL Management Board
• my work with FreeToLiveLeeds and ongoing interactions with relatively highly placed Council staff etc.
• the fact that PHBs are still in their early stages of deployment

I’d like to think that if I can help highlight any process issues at this stage during the pilot and get PHBs working for me, then hopefully they should be able to work for just about anyone else. A near 40% increase in funding sounds like a lot (it is!), especially when you consider that my (now previous) package cost £6.5k per month. Despite the recent economic upturn we are all still under relative financial pressures, particularly for those with care needs accessing public sector services with ever-shrinking financial resources to meet current demand.

I don’t think I’ve asked for anything unreasonable or over the top, particularly given how little I’ve asked for over the years. One thing I didn’t include was getting help towards additional holiday costs (PA Flight tickets, equipment and transport).  At least this will give me something to talk about with them next time though.

Rm.