Ask the expert about campaigning

[Eve_Mencap]

Hi everyone,

My name is Eve and I’m the Activism Campaigns Manager at Mencap. It’s my job to make sure we have lots of exciting, accessible ways for campaigners around the country to get involved in our signature campaigns.

At the moment, our big focus is health. We launched Treat me well in February 2018 with the aim of transforming how the NHS treats people with a learning disability in hospital. It’s really easy to get involved, and there’s a role for absolutely everyone.

How to get started

Anyone can be a campaigner. If you’re interested in campaigning with Mencap on health issues, why not join our Treat me well campaign? Here are some top tips for getting started:

• Sign up to support the campaign here: http://www.mencap.org.uk/TMW. If you opt in to hear from us by email, you’ll get all the latest campaign updates straight to your inbox.

• Take action by contacting decision makers in your local hospital.

• If you are interested in setting up your own Treat me well campaign group, download our new Easy Read guide to setting up a group.

• Check out our two new videos, made in partnership with The Makaton Charity. The first video is about the Treat me well campaign. The second video is about campaigning. Please watch these with anyone you know who uses Makaton.

Ask me questions about campaigning

I’m here throughout Activism Week (15 October to 21 October 2018) to answer your questions about activism, campaigning and Treat me well – these might include:

• How to get started
• How to get in touch with other local campaigners
• What kind of topics you could campaign on locally

I look forward to reading your questions.

All the best,

Eve

[SarahL]

[SarahL]

[GillBill]

Hello Eve

I don’t have any first-hand experience of poor treatment on the NHS. Can I still help with the Treat Me Well campaign or it is only for people who have been directly affected?

[JaneRaca]

I would summarise my top tips for campaigning as the three P’s; persistence, politeness, proof.

• Persistence - the most important quality. Never give up.
• Politeness - don’t give people an excuse to ignore you, which they may do if you are aggressive or rude.
• Proof - always put your communications in writing and keep copies. Members of staff leave over time, but you will always be there with the evidence.

I have been fighting battles for my son James since he was born 19 years ago. Those battles take place on all fronts, because he has multiple disabilities. But the health service is the one I now find the most difficult to deal with.

One of the biggest challenges we face is to ensure that James has a working wheelchair. He is taller than me and weighs 80kg. Without a wheelchair he is virtually stranded in bed. He has a powered chair which he drives himself and that chair is both his legs and his voice. If he is feeling overwhelmed in a crowded room he can just drive out of the door.

He does give the chair quite a bashing; he bites lumps out of the head rest, and when he is excited, bucks in his seat like a rodeo cowboy. However, it’s not his fault and he does not deserve to wait for weeks for the chair to be repaired when it stops working, which used to be often.

I have written a blog about this https://www.mencap.org.uk/blog/activism-week-2018-top-tips-dealing-nhs

[Willsey73]

We campaiged because we speak for Josh and Josh wasn’t being listened to. He needed care closer to home and his family. He needed the bespoke care he has now, and the proof is his vast improvement both physically and emotionally since returning home to Cornwall.

My latest film uploaded yesterday especially for his birthday shows a young man with severe Autism living the life that he needs and deserves and is his right.

All children and adults like Josh are better at home or close to home, and free from medication. Josh is now on no medication and it has improved him greatly.

I hope you enjoy the film, and please do share

[Eve_Mencap]

Hi Gill - yes absolutely. We need allies with this campaign as much as we need people who have personal experience.

Have you taken our brand new e-action? You can access it here: www.mencap.org.uk/ceoaction

Make sure you opt in to hear more from us and then you’ll receive all the updates about the campaign by email.

Thanks for the message

[Eve_Mencap]

I love this video Phill! You are a great example of a parent who fought with everything they had to get change for their child.

It is so good to hear that Josh is settled in his new home, and enjoying being 18! It’s a great age

[Sue2]

Since losing my precious son Nick in the most appalling circumstances I have campaigned unrelentingly for Lessons to be learnt from his death and actioned.
After almost 4 years I finally had the opportunity to meet with the CEO of the hospital where Nick and Oliver McGowan both died avoidable premature deaths. I outlined most of the failings in the care given to Nick and challenged the hospital policies regarding restraint. Nick was subjected to having his wrists tied to his bed and worse still a nasal bridle was inserted into his nose to prevent him from removing his naso- gastric tube this was done without our knowledge or consent and no DOLs in place.
It was evident that staff had not been trained to cope with a patient who had LD and Autism they lacked the competencies skills compassion.
As a tribute to Nick I am campaigning for Training for all Healthcare Professionals.
I am working with the CEO and Head of Nursing to ensure that effective training and measures are implemented to protect all vulnerable patients.
This is Nick’s legacy - no other family must ever endure the heartache of losing a loved one through gross neglect.
Mencap’s “Treat Me Well” campaign must influence radical change in all hospitals.
I urge you to fill in the template on the site and send it to your CEO of your local hospital.
We must stop 1.200 deaths of patients with LD in our hospitals now!

[Willsey73]

Thank you Eve. I hope these films of Josh give hope. Autism has good days, and I want people to see them. Josh is doing really well.