Facing ‘the fear’

Categories:News & Stuff

I don’t usually share ‘campaigning’ stuff through my work role at NWTDT/ Pathways but this piece by Katherine Runswick-Cole really resonated this morning as a fundamental of what Transforming Cares culture change must be about.

The sentences which I think perfectly captures how thousands of people feel for me –  ‘But this ‘good’ life feels fragile and precarious; we live in fear of change. Indeed, in this week of action, the social worker cometh – my heart is in my mouth – I fear a cut to the direct payments package; this would have a catastrophic effect on W’s life. We fear big changes and we fear small changes too – small changes can be big changes for W.’

Health and Social Care must work together (no really together not the playground pretending that currently happens, I’ll show you mine if you show me yours ) – a little financial saving for one can result in a massive financial cost to the other and visa versa, we all know that but it keeps happening. That in turn creates the humungous cost to individuals and families and further damage to any relationship that supports coproduction (don’t pull that face some of you, it is always possible right from the start) and shared responsibility with local public services. The ‘us’ and ‘them’ and mistrust deepens and widens and the anger and feeling of injustice grows and helps no one. Don’t wait till you have a plan to talk to people about involve people in creating the plan for goodness sake.

Local public services should not and cannot be the enemy we must all work together to put the pressure further up the system where it needs to be.

Yes, some people who work in public services are arrogant, don’t have the right skills, enjoy the power, are clumsy, lazy sometimes, controlling – so are some people who work in B&Q (and other retail outlets!) and some restaurants we have all been in. I know I know people who chose a career in public service chose that career, but some perhaps were motivated from a different place than others not the social model most of my friends and colleagues (in and out of public services) strive to achieve but that old Medical model. My Gran always said the world would be boring if we all agreed on everything and nothing would ever change, true I think. We need positive irritation for change or we would stand still. Some in public services are elevated way beyond their skill, some are robots, some don’t have a creative bone in their body and have no interpersonal skills,  well that’s not just public services is it? Most though, in my experience, are stuck in a god awful system trying to deliver the utterly undeliverable cuts forced on them not by our local services but by Westminster. That is not meant to sound like I am saying ‘poor public services’ not at all, local teams can and do do immense damage at times and it sickens me.

As a social worker I trained so that I could understand enough about the Law to fiddle with it to support people get that good life – no doubt I too made mistakes, none of us are perfect and if I did I am sorry. No one person has the answer but maybe together….

The only way we will all survive in tact with integrity is if we have adult relationships as equals and do this together. To achieve that we must tackle that fear that  emails, letters and phone calls from health and social care teams bring to families. I know there is a job to do for public services with my work head on and I don’t deny that but I also know the fear in the pit of my stomach when I see a certain name on an email, phone number on my phone or frank on an envelope – what in gods name is that about!!!!! I then turn into a Meerkat – alert, examining every word, practising the conversation, researching policy and practise, gathering my evidence and army, often only to find that the school just wanted to plan for next term or wanted a hand to think about something, sometimes though it’s the other and I was right to be wary and ready. That is a behaviour I have learned in the 13 years since my Emma was born #pavlov’sdogsI think this has to be our focus for real transformation

How terrible that the very public services who should be there to support and help generate such levels of anxiety and genuine fear. My stomach is in knots just thinking about it and that’s because individuals and families all know that the real power lies in the hands of someone being pulled by different (financial) forces that are about micro budgets for ‘my team’ who are not able, because of the stress and pressure public services are under, to think beyond reacting to the situation directly in front of them and the savings targets they must achieve in their tiny (in comparison) budget. Even when our families are having a good life we know it’s precarious and we are not really in control, we can change this but only if we work together with local supports and services.

We must do all we can  to change that through genuine coproduction of individual and strategic plans that are honest about the financial constraints, celebrate the resources and knowledge people bring with them and most of all help people feel less like their grip on a good life is down (often) to the personalities in local offices and may last only until they next round of restructure/ VER/ VES.

Transformation is not a transaction that can be delivered to us. We must work together, collaboratively with everyone as equals with transparency (even when it’s not good news) and honesty.

In the words of the NW Regional Forum this is about a long term relationship not a one night stand – we are all in this for the long haul and I know we ultimately all (well I have to believe the majority of us) have the same goal for ourselves and our friends and families – a good life well lived.

Anyway – have a read of Katherine’s blog here –


We need your help to win another award…

Categories:News & Stuff
Pathways have been nominated for the prestigious National Diversity Awards in the Community Organisation – Disability category.
We need as many nominations from as many people as possible please. Can you help, anyone can do it, it takes a few minutes. If you need a hand let us know.

Improving Health and Lives News October 29, 2015

Categories:IHAL News

Improving Health and Lives News October 22, 2015

Categories:IHAL News
  • New resources on Epilepsy Risks and SUDEP
    Studies have shown people with both epilepsy and a learning disability, are at an increased risk of Sudden Unexpected Death in Epilepsy (SUDEP). A recent study in Leicester found that epilepsy is the second most common cause of death for people with learning disabilities. It also found that in the majority of cases, no-one had talked to either patients or their carers about the risk of SUDEP and how that risk could be minimised.
  • Reasonable Adjustment Database

Improving Health and Lives News September 24, 2015

Categories:IHAL News
  • New health and care study
    IHaL is starting a new study of health and care for people with learning disabilities. This will find out how many people with learning disabilities have a wide range of important common health conditions and how many have had important health checks, flu jabs and cancer screening. For a few particularly important conditions including epilepsy and diabetes it will look at how successfully they are being treated.
  • IHaL Survey
    IHaL has now reached its fifth year and we would like to know your views about our work. Originally set up as a public health observatory in 2010, we have been part of Public Health England since 2013 and continue to work to reduce the health inequalities experienced by people with a learning disability.

Improving Health and Lives News September 17, 2015

Categories:IHAL News
  • Easy read leaflets about pain management
    The Royal College of Nursing (RCN) has launched three accessible patient information leaflets on pain. These are all in an easy read format. The Pain and Palliative Care Forum and the Learning Disability Nursing Forum have worked together to develop these leaflets.

Improving Health and Lives News August 27, 2015

Categories:IHAL News

Improving Health and Lives News August 6, 2015

Categories:IHAL News
  • Dysphagia information request
    The Improving Health and Lives (IHaL) team are preparing their next ‘reasonable adjustments’ report and the focus is dysphagia management for people with learning disabilities.

Improving Health and Lives News July 23, 2015

Categories:IHAL News
  • Inclusive Communication Essex report
    Essex County Council has recently won an enei (employers network for equality and inclusion) award for their Inclusive Communication Essex (ICE) resource service. ICE is a consistent approach to communication across all ages and needs, ensuring individuals with learning disabilities who have difficulty understanding, and cannot rely solely on speech, are included and contribute to society.

Outstanding Leadership Award 2016

Categories:All about us 2015
Do you know an Outstanding Leader?
We want to hear about them now. 

  • Who’s your unsung hero or heroine?
  • Who do you think is so inspiring they deserve to be recognised for their outstanding leadership in the North West?
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