Katy Styles

I am a full-time carer to my husband, Mark, who has a disease of the motor neurones, called Kennedy’s Disease. It is degenerative and progressive and inherited. It affects his balance, mobility, his muscles are wasting and it affects his swallowing and breathing. He has been ill-health retired for 4 years (at 46) from a senior local authority role and I have been his full-time carer since this time. Previous employment I was an experienced, motivated and highly skilled secondary school teacher, teaching geography and running my own department in Leisure and Tourism. Teaching gave me excellent organisational, presentation and communication skills which I continue to use through my volunteering roles, as a campaigner and trustee. Campaigning Achievements We Care Campaign - I created the We Care Campaign on my own, this year for carers themselves, when I realised that carers voices were unheard by decision makers. Carers charities were also reluctant to campaign on caring issues. My aim is to have carers truly valued by society, as our lives matter. We are having a Carers Event in Canterbury to celebrate our achievements so far. I started the e-petition calling on government to publish the Carers Strategy in January when the Action Plan had been announced by the previous minister. The e-petition came about because there was no other way for a group of carers to hold the government to account. https://petition.parliament.uk/petitions/209717 We had been waiting since the previous year for the Strategy. Over 1,200 people have signed the petition so far. I have galvanised carers support organisations, who also contributed to the consultation to write to their own MPs and write to you. They have published my petition in newspapers, in online magazines, through social media channels. Carers have been interviewed, even speaking to Ministers about their disappointment about on the lack of a Carers Strategy. I myself have been interviewed on BBC Radio Kent, in my local Kentish Gazette and by BBC reporters. https://goo.gl/xVKgKs Latest reference in Hansard Barbara Keeley mentioning my national campaign on the Carers Strategy petition in a social care debate. Previous campaigning with MND Association With the MND Association, at a national level, I have spoken at high profile parliamentary meetings and attended lobbies. I have been particularly successful in highlighting the financial support disabled people and their carers need and played a significant role in getting the Government to remove Carer’s Allowance from the benefits cap and to exempt people with terminal conditions like MND from unnecessary re-assessments for Employment and Support Allowance (ESA). https://www.theguardian.com/voluntary-sector-network/2016/apr/08/-disabled-people-carers-benefits-motor-neurone-disease At a local level, I have successfully influenced a range of decision makers from politicians, commissioners, even individual healthcare professionals, to improve access to health and care services. When the local neurologist with specialism in MND left our hospital, I successfully lobbied to ensure the 50 people with MND living locally were assigned a new neurologist (which wasn't going to happen). Another proud moment was told by a student that a talk I’d given inspired her to pursue a PhD in neurology. I also successfully helped lobby to get a national clinic set up for Kennedy’s Disease, now running at the National Hospital for Neurology and neurosurgery in London. We have written articles in the Guardian, in healthcare magazines, been interviewed on national and regional tv and generally raised the profile of Kennedy’s Disease and MND considerably. I also ran the social media twitter account of NHS England with Mark, highlighting the complex nature of his disease and our campaigning for better services and support. https://youtu.be/_fBGIuGQXVA Kennedy’s Disease Clinic video featuring Mark and myself. In 2017 I was elected a trustee of the MND Association and so am shaping the strategic vision of a medium sized charity. I am there to represent people affected by MND, and their families and carers. I was a runner up in the Health Category at the Sheila McKechnie Campaigning Awards 2017. I live in Canterbury, Kent.