Friday, 20 September 2013

Im off to the Tory Conference please share your #CareStories #CareIdeas

Finally I have some time to write this - it's been a busy few months.

I am off to the Tory conference next week as part of the Leonard Cheshire Access all Areas scheme. Putting personal political feeling aside I'm both excited to go away, I love adventures and new experiences, and full of trepidation as I know I will be exhausted and it won't be easy changing minds or even opening them up.

I have chosen to focus on Social Care only - other amazing women Kali Franklyn and Steff Bensted are focusing on Welfare reform.

So why Social Care? In part the timing is good as the Care & Support Bill is working its way through parliament at the moment - it goes to the commons in mid October.
You can read some fact sheet here: Fact sheets

If you receive social care or think you need it this bill is massively important. I'm focusing on three things:

1. Lowering the proposed National threshold from Substantial/Critical to Moderate. Currently every single council with a social care department can decide what level to set its threshold at - threshold being the line you need to cross to get care. Many are setting the bar so high its a council of last resort.

The national threshold would mean all councils have to use the same criteria at the same level - so far so good, but it's still too high.
Im arguing that if we have a moderate needs national threshold it will: 

-Save money in the long run as many will need small awards often less than £10K a year and can maintain their independence at that so they don't fall into boom and bust cycles of ever more expensive care needs.

-Particularly for people with mental ill health a small ongoing package of support could mean the difference between coping and not in fact for some may lead to recovery, rather than the ever present fear of falling off the cliff edge - I'm talking three hours a week to make sure shopping is done, paper work sorted etc. Not even the level of "true independent living

-Be an investment in working aged disabled people that would enable them to make choices about how they lived their life from volunteering, studying, working, bringing up kids what ever - if they are unable to get much needed support then all those aspirations are just that aspirations - Yes if people had moderate support the different to their lives and that of loved ones would be massive. Let's not forget unpaid carers in here.

I could go on but you get the picture I'm sure - so please reply below and share your Care Ideas - If you have tried and failed to get care due to thresholds being too high, what would a small award of say 10 hours a week of enable you to do? What difference would it make?

My second thing to talk to people about is portability of care: Something Baroness Jane campbell has lobbied hard for - Basically if like me you might want to move but have finally sorted a fairly OK package of care and support the idea of moving even to the next town a pretty horrific idea because it means:
  1. A new assessment and you might lose all the current support because of different rules see my first argument. 
  2. The transition from one place to another is bound to fail, not get sorted in time, be a nightmare or all three and you might then lose the great new job, not get your house, miss deadline for school all sorts of things you don't think about if you don't need care.
So the portability of care idea could be guaranteed:

-You keep same level of care paid for by authority you were in before your move for 3 months until new assessment can be done.

I totally agree with Jane on this and while she withdrew her amendment - it is something we need.

What opportunities have you turned down because you feared losing the support you already have, would not be offered somewhere else, or if you did move whats been your experience?

I won't have long with anyone - I want to change the narrative to talk about social care as an investment in people, how working age disabled people should not be lumped in with older people, who let's face it have very different needs. I'm not taking away from those needs, simply recognising as a 43 year old woman I have different needs. 

Lastly and it's very personal I blogged about it recently - dignity in care, how investment in social care goes beyond the person, it's about investment in the massive industry. 
-Zero hour contracts
-Ever changing staff
-15 minute care visits
-Not paying for travel time 
-Little beyond statutory training for care workers
I could go on I have to pick and choose so again
Please share with me your Care stories, Your care ideas. The more personal I make the story the more impact it might have. I will also if I have time make some little postcards with some quotes on them and leave them around bars etc. 
Leave a comment for me on this blog and share it as widely as you can.
You can leave an anonymous comment or email me at

Tuesday, 3 September 2013

My "virtual" memory keepsake box

As summer turns to autumn, so does the time when spoons are low, adventures are rare, and spoons are counted in hours or even minutes. It's hard to hang on and think I will get through this and be well enough again to have a few adventures.

This isn't maudlin, it's a simple reality of life as a spoonie - its almost four years in now and while still unpredictable in nature - I have a slightly better handle on listening to my body. So this blog is a homage to my summer - a chance for me to create and store away a few memories to look back and and smile...

But first a dedication to LM - we have just celebrated our first wedding anniversary - was an amazing day, we went to a very posh Michelin Starred restaurant to celebrate with a little help from my wonderful sister & brother in law.

Our wedding day 2012
Every year since we got together we do a B loves P - kind of our reminding ourselves what's important about being together
the Traditional B luvs P

Besides the sea I'd say jumping the waves - more like hobbling through them :D, we had a fab couple of days in Suffolk.

Then we went camping - I was maybe a little ambitious about the amount of time i could manage, but was still lovely to be away, besides the almost wheeling into a canal incident it was all good :D. We ate too much, drank too much and played board games..bliss.

LM doing something with a pineapple

me discussing the finer points of life with a scarecrow

Dahlia's I just love them

LM & friends doing a cataolgue husband as ever does his own thing

and then it was home time and back to life..have loads of photo's, and a few more memories to go in my virtual keepsake box. I'm sitting here tonight thinking oh arse I'm out of spoons how did that happen I mean I only....

-did some healthwatch chairing stuff
-went out for our anniversary
-saw my son
-did a bit more healthwatch stuff
-and baked...

its not like i did much :D

Note to self spoons matter especially when the first sniff of autumn appears and it's time to slow it down and revert to normal spoonie life..good bye summer it was a blast.

Me and LM

It doesn't matter where you go in life, or what you do..Its who you have beside you

may your spoons be with you x