Helen Turnbull Wright explains how her own experience of being affected by dementia led to support Alzheimer's Society campaigns.
Remembering Not to Forget, a small charity supporting people impacted by dementia, recently made a donation of £1000 to support the Alzheimer’s Society campaigning work. Helen Turnbull Wright, one of the trustees, explains why they chose to make this donation.
Bridget, Helen’s mother, was diagnosed with early onset Alzheimer’s in 2006, aged 60.
We are 'lucky' in that Mum is entitled to full Local Authority (LA) funding for her care due to being below the savings threshold. It's a mixed blessing as at every turn we have seen first-hand how the shrinking budgets are putting strain on the system, and to provide what we think is a minimum quality of life we are topping up her care budget to the tune of £200-£300 per month. This excludes the increasingly exorbitant twice monthly train fares from London to Somerset which my sister and I buy to relieve Dad at weekends.
Services just don't stretch to the level of need, and to compound the problems very few service providers will accept LA rates. I can't blame the providers for this - the LA budget for a week of residential respite care is roughly 50% of the private rates. It's a similar disparity for personal care assistants which probably explains why it took us five months from approval of funding to getting cover for a further 3 days a week for Mum’s morning and evening personal care support, and then we only got it after Mum went into hospital after collapsing. It also took 9 months to get a week of respite care approved (after 10 years of homecare) because at each stage the process kept changing as additional rounds of budget cuts came through. When it finally happened the respite was a huge success for both Mum and Dad, but we have no idea when or if we'll be able to do it again.
The maddening thing is that the cuts have led to some totally crazy outcomes. The brilliant local day care centre Mum goes to said they could no longer take LA funded placements as the rate was just unviable for them. So for all existing clients the places were continued through Direct Payments (DP). Don't get me wrong, we were delighted Mum could continue to go, but the DP rate is more than the previous LA allowance and there's now the cost of a DP facilitator, auditor and if I happened not to want the hassle of managing the account (which with quarterly audits is a huge headache) someone to administer the DP account for us. And all in the name of saving money.
The social workers we deal with do a fantastic job in untenable circumstances. It must be awful to go to work each day, to an under-resourced team and have to spend most of the day saying to families at the end of their tether 'sorry there is nothing we can do to help’. But the upshot of all this is that families all over the country are filling in the gaps in the social care system, with their time and their money, and it's just not sustainable.
That's why Remembering Not to Forget chose to support the Alzheimer's Society campaigning work, and are encouraging others to as well. We've written to our MPs to ask them to support calls for new investment for social care in the Spring Budget, it's easy to do so please join us.