It wasn't a waste of time if you learned something

Announcing changes at Your Voice Matters. We are ceasing to operate as a not for profit organisation and my role is now in the background.

I began this journey in 2010 after Cornwall Care Ltd banned me from visiting my Mum-in-law who had dementia. At that time I did not know this was happening to many other families all across the UK.

I have heard from many families and care staff, sharing their despair, anger and frustration. From my own and others experiences, my eyes have been well and truly opened, as I have come to learn just how toxic the care home sector is and how well protected they are. It is far worse than I ever dreamed at the beginning.

I was appalled by this national hidden scandal, and felt so passionate about making the lives of elderly safer and happier in care homes, I chose to put aside my own working career to try to do something about it.

I have worked voluntarily for almost 7 years, 60-80 hours a week, increasing to 100 hours at times of breaking media news, planning for Parliamentary meetings and campaigns. This has been whilst suffering from a chronic pain condition, raising two children and having to deal with my own personal care home nightmare. It has proven impossible to keep on top of the ever increasing workload. Without the support of my husband I would not have been able to invest so much time and money into the cause.

Ian Cresswell, my colleague lives the opposite end of the country, works full time and gives so much of his own time to help Your Voice Matters. His loyality to me and Your Voice Matters has never faltered. He has been my rock and I will be forever thankful for his support and friendship.

Myself and Ian share a fantastic vision of services we hoped to deliver across the UK. Given the opportunity it could have made a big impact, helping many people, but we could not progress these ideas without money or resources.

Our trips to Westminster were vital to represent the voice of the people at Ministerial meetings. More opportunities also presented themselves for us to raise awareness on the real issues in care homes, as well as meeting my local CQC senior managers regularly and on occasions national managers.

We were becoming more established, respected and trusted, which resulted in more people contacting us, especially helping on a one to one basis. Our knowledge was becoming talked about and we began to receive more enquiries from the media and others. We never charged anyone for our time or help.

In 2015 it became clear we needed to raise money to sustain Your Voice Matters, to expand and bring our vision of extra services to families and care staff into reality. To do this we needed to move Voice Matters out of my home and recruit. This is why in August 2015 we became a not-for-profit organisation (a Community Interest Company), to ensure our finances were transparent to the public.

We are 18 months down the line and unable to secure income through funding streams. We are truthspeakers, a campaign/pressure group challenging the system. National media continue to exclude us, even though they regularly ask us for contacts and inside information. We rarely receive credit for this. Organisations support us in private and tell us what a great job we are doing, yet few want to be seen to be supporting us publically, often because that could compromise their own network and funding streams. Should the focus not be on the vulnerable person in the care home? Surely that is what we are all wanting to achieve?

In 2016 we declined the opportunity to become a paid Working Partner to the Care Quality Commission (as much as we would have loved the money!). We could put no price on our freedom of speech. It is those open, honest and often uncomfortable conversations, not paid partnerships, that will bring the changes we need.

Few are prepared to donate, and there comes a time when you have to draw a line. We have now submitted paperwork to cease trading as a Community Interest Company as it is unsustainable to remain as we are, and I cannot personally continue to finance Your Voice Matters, or work such long intense hours. I have made the decision to explore options for paid employment, but will continue my work directly with the Government to bring the important issue of care home bans and evictions to a satisfactory conclusion and any future projects if required. Your Voice Matters will launch a regular newsletter next month for which I am taking responsibility for. This will be posted on the facebook page and web site.

I am very grateful to Ian for offering to continue managing the Your Voice Matters facebook page. He will respond to private messages/emails from anyone who needs advice and/or support, and continue his research and collating data on care homes.

The web site will remain as a valuable information source.

Putting the cause itself to one side, the one thing that has been the most shocking and painful thing for me has been the public display of negative attitudes by other campaigners in an attempt to discredit both me and Your Voice Matters. It is not something I wish to be in contact with anymore. Too many angry and hurt people, too many egos. I too am hurt by the care home sector, I am no different to anyone else, but I don't go all out to hurt others I know are hurting. i have struggled to comprehend the actions of others.

Thank you for your support. Your Voice Matters is still here, it is just different! Change is never easy, but sometimes necessary.

"It wasn't a waste of time if you learned something."


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