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A conversation about the dire situation of social care in the U.K.

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We all know social care within the UK is in a perilous position - there have been 3 news articles so far on Radio 4 today - we are constantly reading about the lack of good care and limited choice in national papers. The time for talking alone surely must come to and end and the time for action must begin. Below is a Facebook page I set up to raise awareness of the nightmare we currently find ourselves in. We have great care for my mother at the moment and we would like it to continue but unfortunately because we made a mistake (although we did check the status of my Mum's wonderful carer) she will now be denied her care and we will need to find someone else (very hard as there are diminishing numbers of carers) by next week. We are so depressed and frustrated by this turn of events and the £7k penalty will leave us without flexibility to fund and pay for good care. This is our story............

In 2011 our father died of lung cancer, I was living abroad at the time but soon returned to the UK with my sons, (my husband remains living and working overseas) to help support my Mum as it was becoming apparent she was having some difficulties with her memory. She was soon diagnosed with vascular dementia. My sister (who is also local) and I decided to sell the family home located 11 miles away and bring her over to live in the town in which we both reside to make life a little easier. At the time (2012) we both had teenage children living at home and initially we Mum lived with me for 6 months whilst we renovated the much smaller and manageable house we had bought close to the town centre as we realised that driving would become an issue. As Mum's illness progressed we found it increasingly difficult to provide the constant care she now needed and had a period where most family members were involved day to day. We then decided to employ someone who could take a bit of the strain away and we found a fantastic lady (who is still with us 4 years later) who provided care and support for one day increasing to 2 days. This was self funded as our Mum is fortunate to have a military pension as well as her state pension. As she deteriorated further (she was leaving the house at odd hours, constantly walking between my sister's and our house - exhausted and anxious- unable to cook or feed herself), we took the bold step of employing an amazing lady who came with fantastic references from a local family who was willing to move in immediately and take over the care of Mum. By this time, she had also become doubly incontinent and couldn't manage her personal care. We also applied for a personal budget for Mum and we were lucky enough to be awarded a sum to top up her pensions which allowed her to remain at home. Although the process took nearly 2 years we were incredibly grateful as Mum's savings had dwindled away. We manage this by a direct payment. Mum was still at the centre of her community and family, accessing the local town centre, jumping on buses and visiting the local out of town supermarkets she so enjoys....a simple life and only possible with the aid of her part-time and full-time carers. The continuity and familiarity of her care and the love she has for both these ladies we believe keep her out of harm and not accessing A&E services. We have learnt to manage her day to day life privately with some financial help from the local authority, so there must be a huge cost saving somewhere.
This now has unfortunately come to a crashing end....the lovely lady we have employed does not have a right to work here (we did check when we first employed her and she showed us a work/resident permit). She also has a National Insurance number and pays National Insurance contributions and Income Tax. We obviously contribute too in the form of an Employer's National Insurance contribution (we pay her through a third party organisation so it's all transparent). We have now been fined by the Home Office (currently £7,000 - a reduction from £15,000) and have been told we are not able to continue to employ our wonderful carer who supports her family in South Africa (her daughter is HIV positive, she contributes to her drugs). She has paid into our system for many years (I wonder if she'll receive a refund as she's illegal , amazing the State are happy to take her contributions though) and provides exemplary care for our Mum who loves her and has now formed a close bond. Who are the winners when she is deported/leaves the country?
1) Our Mum? Who is in desperate need of round the clock care?
2) The carer and the family and community she supports?
3) The State she contributes to?
What happens to Mum? Will a residential care home be the only option? Are we not able to make a choice? If we wish to keep her at home will we have to employ agency staff at a far greater cost and a far greater turn over of staff Will the local government pay for this increase?
Why is care in this country so constrained and WHO will raise this as an issue and actually do something about it? How do people know what they should contribute? Should people be forced to sell their homes for care in institutions (they are not "homes") that cost in excess of £1,000 per week? What happens when that money runs out? Would my Mum have to move homes as there isn't a state place for her? Do we really want to lose control?
We don't have an answer....we are worn down and depressed by a system that doesn't seem to support my Mum and many others in their final years. In 3 little words.....we are desperate. Please share to highlight the continuing problems and dilemmas of an increasing aged population. Thank you

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