1. The Care Net - Starting local groups

 

Welcome to The Care Net’s first post on how to develop your local groups if you don't already have one.

If you do have a group and are interested in joining, please send us your logo if you have one, so we can add it to our main logo and share it. The strength of our connected network is what matters to us most.

Remember, the whole idea of The Care Net is to build strength both locally and nationally. We can only achieve this by promoting your groups under The Care Net logo to demonstrate unified support.

From my experience of running a local group and supporting people, one thing I've learnt is that it takes time to organise and maintain these groups. Not just hours, but consistent effort is key.

Locally, we have 50 members and are growing, covering both Direct Payments and Personal Health Budgets. We chose this because both budget holders face the same challenges, regardless of charging. Reaching this number didn't happen overnight; it requires regularly posting on multimedia platforms. I do this about four times a year. You don't need to start from scratch every time—use the same advert/logo so it's easily recognised.

Here’s some example wording that I use for my Facebook posts: Lincolnshire Personal Health Budgets/Personal Budgets users group:

"Get involved; let's have a strong voice; it's our service. Independent Coproduction, Social Care, NHS, continuing health care, benefits, advice, advocacy. All free, no unnecessary meetings, accessible online, up-to-date information - join us "- link to pages, with our local logo showing our county flag: ( see end of post)

The overproduction of paperwork and systems that people are required to follow is astonishing, and these often change weekly with new court decisions and judgements from local government, Parliamentary and Health Ombudsman, as well as system changes from Local Authorities. Where we have such information, we will share it through our groups.

You may notice that we’re not making any demands or asking the government or authorities for anything. All we are asking at this point is for everyone to join together so we can have a unified voice. What we do as a group will depend on the group’s strength in numbers and needs. As usual, we will ask for your suggestions and then proceed from there.

As our group organisations have always done, we will share with you the relevant information you need to stay up to date across our current platforms.

We will not be asking anyone to commit to meetings unless you wish to have your own. There are two reasons for this. Firstly, anyone who has attended a meeting will know that they are time-consuming, with little progress made apart from deciding that another meeting is needed. The second reason is that we have care responsibilities and disabilities that affect us, causing time constraints (for example, it takes my carers 3 to 4 hours to get me up and ready), which can prevent many people from participating. One of the main issues with authorities is that it’s always at their time and place. We believe in sharing information and letting people participate as and when they want, in a way that suits them.

Instead of meetings, we suggest following the practices outlined in our blog about accessible meetings, particularly around preparation and allowing those who can attend the opportunity to have their say.

https://haloabletec.blogspot.com/2016/11/making-meetings-fully-accessible-for.html 

If you want a meeting locally, it can be organised locally, allowing people to meet up in person or online—completely up to you.

For day-to-day operations, the groups can run online independently, with people posting queries and responding to each other. Any questions that cannot be answered can be referred to The Care Net team members’ pages (Facebook and X) or referred back to us for an answer. We will then help or endeavour to find the answers for you.

As a group, we have always monitored and written about the issues that people are most concerned with. For instance, I am a member of many online groups, and you soon get a sense of what’s needed.

We then develop shared resources, as we have done with Disability-Related Expenditure and other letters and forms to assist. Again, as we do now, anything produced regarding training (which we will always endeavour to offer for free by obtaining funding elsewhere) is always based on people’s needs. You will see, from time to time, short surveys on our group pages asking what you require. Any training will then be placed online via YouTube for people to watch in their own time if they wish.

The key message here is consistency—don’t be disheartened if your group doesn’t take off immediately. It will take time.

Please also be mindful of those who don’t have internet access or can’t use such services. However, that doesn’t stop like-minded people from inviting or talking to them, letting them know what’s going on, and helping them to participate through people like yourselves.

Before I finish I just want to put a personal story that resonates with me. As a lot of people like myself have been working on similar things for a while you can get quite dejected. When this happens I try to keep this story in mind

The starfish story......

A man is walking along the beach, and he sees thousands of starfish lying on the beach for miles and miles. He starts to pick one up and throws it back. He does this for hours and hours and yet the numbers don't diminish. A man who has been watching the other man for hours walks up to the man who is throwing the starfish In the sea, and says just give up you could do this for days and looking at the amount of starfish on this beach you can't hope to make a differemce. The man continues what he's doing pick up another starfish and throws it in to the sea, and says made a difference to that one!

So keep going people one person at a time if needs be.

We look forward to working with you. Our next post will be on obtaining the information you need to support your groups.

As always, please let us know if we can help in any way, and we’re always open to suggestions, subject to approval from the majority of those involved.

Thecarenetuk@gmail.com 

Haloabletec

Adult Social Care Warriors

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