I've Let You Down

A blog I would not usually write, but one that I urge you to read.

For those that don't know me, I have worked hard in the local community for many years, especially in the disability sector. Throughout the years I have helped people in Northumberland access appropriate care, wheelchairs, funded 16 people on respite for a week, petitioned for accessible housing, accessible shops, and much more. 

Being disabled is a constant battle for your rights, and whilst I give up my time to fight for people, I simply cannot make the ‘bigger’ changes. I rely on my council and MP to listen and help make these changes, and honestly, I feel incredibly let down. Deemed as one of the regions 'poster girls' who happily will come speak (for free) about disability at events, attend professional meetings and advocate for the region in my own time, it's a shame it hasn't always been a two-way conversation. 

This is why, today, I'm sharing this blog with you. I tried to make a difference. I could have made a difference. And it even makes me incredibly upset writing this that not more has been done. So, I want to highlight a few projects I've been working on, often quietly, over the years, and the responses in the hope that I can now gain some community support to take them in the right direction. 

Accessible Housing

21 February 2018- Accessible Housing

One of my regulars involves accessible housing and this one was a general petition for more accessible housing in the area.

(Brief background info: I am still in an inaccessible house and housing allowance doesn’t cover private rent in our area)

The response which was forwarded to Guy Opperman MP from the local councilor

“As highlighted above, they may however not be fully adapted/wheelchair accessible but in the case of the former, which does not include provision for bungalows, there may still however be an opportunity to influence the final provision which we can explore as Kate's experience clearly provides a powerful example of local need”

Nothing was done to follow up on this. There still has been no accessible housing built in the area. Humbles wood built 60 council houses, none of which were accessible, with more to come (also none accessible). That's 404 houses in total built on the property with not one of them being an accessible council house. When I was part of the partnership and this was going through planning, bungalows were involved, so I'm sure with an MP's help this could have been changed.

Health and Wellbeing

8th January 2012 - Health and Wellbeing

I attended a meeting after an inspection showed ‘weaknesses’ in Northumberland healthcare for the needs of SEN and disabled young people (0-25). I sent a letter to Guy Opperman MP highlighting the key issues I had faced, which included getting kicked out of my high school for being in a wheelchair and the appalling (non-existent) mental health support I received leading to a month in a psychiatric unit. 

Response: “I know Guy has looked at your e mail and will be replying asap” Gordon. That was it. Thankfully, I took down the details of the head of care when I was at the panel and managed to get in touch with her at a later date.

21st November 2018 - Benefits

Northumberland decided that disability benefit would count as income (one of the only counties to do this) therefor everyone’s contribution to care costs went up dramatically. I could barely cover costs for medication, equipment, special dietary requirements…ect anyways but my care costs quadrupled. And, I wasn’t the only one. I contacted Guy Opperman MP, who contacted the DWP

Response from DWP via Guy: ”Because local authorities are responsible for social care, it is up to LAs if they consider PIP benefits as income, and take this into account when considering what someone is entitled to in terms of social care. DWP doesn’t consider PIP in terms of income with regard to eligibility for other benefits, but it is up to LAs whether they do - I.e we can’t stop them doing that. Therefore, it might be that you need to follow up with the local authority rather than DWP, but I can’t be sure. It is just a hunch that this might be what the tweet below is referring to. However, I don’t think we can follow up here and provide a full response unless we have consent from the constituent in order to look into her case specifically. Therefore, can I leave with you to follow up and use the usual channels in order to get her consent and details if she does want Guy to look into this?”

This, again, was not followed up. The result of this was I had to ‘prove’ my disability once again and fought for months with the authority over payments. I had to send them receipts of my food to prove my spending. Even now, I don’t know if this motion has changed and my benefits don’t cover my outgoings for my condition. I hear from many people who still can barely afford to live on benefits.

Coronavirus

It's just been in the news that a disabled man starved to death during the coronavirus lockdown. And, he won't be the only one. The sheer neglect disabled people had to suffer during this pandemic is unimaginable and what upsets me the most is we told you. I repeatedly had warned about the difficulties disabled people were facing and had no replies. 

12th March 2020 - Coronavirus

Example of messages include (beginning of covid-19):

“Hi Guy (and team), A quick one about the Coronavirus. There have been absolutely no guidelines about old and vulnerable people which is appalling. I’m busy not just campaigning, but answering messages around the clock now to try help support people as to what to do (despite not being a medical professional... so I feel like we need some input!) Is it possible that we can team up, with the help of someone in the medical field, to produce some sort of infographic (I don’t mind creating) for Northumberland about what to do if you’re old/vulnerable? People are really struggling.

Major problems being:

- What happens if a carer in the family gets ill 

- what happens to people who need 24/7 care and they get ill

- should we be taking extra measures already like not going out

Etc

Response: We’re working to ensure that the most up-to-date information that we can obtain is featured on Guy's website: www.guyopperman.co.uk/coronavirus.

There was no information on here which helped at all. In fact, he provided shielding information on week 11.

18th May 2020 (Mid-pandemic for shielders)

Points I highlighted in my email (it was a long one)

• Scope has found that 28% of disabled adults feel forgotten by the Government. 
• I wanted Guy Opperman MP to read the Scope report and raise these issues with the Government and in Parliament. 
• People are contacting me daily to say they have to choose between getting food or heating. They also are struggling to get said food, especially since people on PIP/ESA aren’t applicable for the £20 a week increase like those on other benefits.
• People have been told they need to sign DNR’s, can’t even pay at checkouts now because the new social distancing restrictions aren’t accessible, disability is once again bottom of the pile. 
• Care has a huge issue, I myself have had to stop carers because of my risk my parents now have a 24h care job (usually done by 2 agency carers) plus managing their job, caring for my sister and nephew
•  It was 5 weeks into shielding my care manager got in touch to ask if I was ok and to update my care need - which isn’t easily met. 11 weeks in when the shielding service got in touch to ask if I had food and medication. I didn't receive any food parcels.
• I also would like to ask for extra things to be put in place after the pandemic such as mental health support, extra support/relief for carers, and campaigning for disabled rights.

Response: We’ve passed your e-mail on to Guy, in order to ensure that he is aware of your specific requests, as well as your detailed comments regarding this important matter.

Moving Forward

I owe an awful lot to Northumberland, but most of that is the fabulous community that has rallied around me when I have needed support. I feel used by some of the higher authorities. I was made 'Community Champion' in 2018, and yes, I put an awful lot into the community, but I wouldn't have accepted the award if I knew I was still going to be ignored. 

I've been to countless events where people are only interested in getting a photo of my assistance dog, I've been told I'm 'too famous' for my local community and the real truth is, I don't engage if I don't get treat correctly. I'm getting tired now, and this is what this blog is really about. 

I haven't lost my passion for activism, but I can't do this alone. In the past week, I have phoned up doctors to try to get medication sorted for vulnerable people and even Sainsburys so someone could get their shopping sorted. I know there are many volunteers also doing this, but the fact of the matter is, this shouldn't be the case and we should have more support.

So, you can help me. Please, contact your MP and tell them about the issues disabled people are facing right now.1 in 4 disabled people feel forgotten by the government and Scope has a template where you can email your MP, just don't forget to put your address in there! https://www.scope.org.uk/campaigns/disabled-people-and-coronavirus/. Put pressure on your MP if they aren't responding too, for too long have I let my replies go unanswered. 

On a personal note, know your worth. I feel like I've let everyone down. One, for not getting answers and for pushing hard enough. But also, for letting things get to this stage before I spoke out. For years now I've been fighting to get enough of a name for myself so I could have a voice. Now I'm using that voice for the right things. 

Kate x

Follow my socials: @katestanforth