Invites have gone out to our next meeting at A Chance for Life Penrith. Thursday 11th October at 10.30 am.
We are pleased to welcome Pat Newlove to the meeting to talk about Myaware
Myasthenia means muscle weakness
- Myasthenia affects all ages and genders. It is treatable and can be brought under good control with medication. In some circumstances, it can be fatal.
- It affects the muscles that let you move but not the automatic ones like your heart that you don’t have to think about. Your brain tells your muscles to work, but the message doesn’t get through.
- Myasthenia gravis, ocular myastheniaand Lambert-Eaton myasthenic syndrome are autoimmune conditions whereas congenital myasthenic syndrome is caused by an inherited genetic fault
Barrow Community Kitchen is a Community Interest Company set up to provide meals for the community. It is a place to come if anyone has suffered benefit sanctions, on low income, bored or isolated. Volunteers are needed to assist in the kitchen with food preparation, serving meals, cleaning and tidying, clearing up after meal service, pot washing and any other duties. They also need volunteers to run art and crafts or anyone that has any skills /hobbies they would like to share/teach. A Volunteer Director is also needed, ideally with experience in writing funding bids.
The candidate will need experience in writing funding bids and previous experience in working in charities. Contact Sharon Foden on 01229 877909.
CQC Sexual safety on mental health wards: The Care Quality Commission (CQC) have published a report calling for new national guidance to improve the sexual safety of people and staff on mental health wards. Read more
4 out of 10 PIP claimants do not appeal as it would be too stressful: The DWP has published new quantitative and qualitative research that explores claimants’ experiences of the whole PIP claim process. Disability Rights UK, welfare rights and policy adviser Ken Butler said: “The only way to reduce the number of appeals is for the DWP to make radical changes to the PIP assessment process so that most decisions are made right first time.” Read more
Britain’s housing crisis: slow progress and a radical quick fix:The University of York’s analysis on the state of the UK private rented sector was shocking, finding that one in three homes in England at the lowest rents are classed as non-decent, with children living in unacceptable conditions. We need to focus on innovation and scaling up the solutions that make the sector work better, now. DR UK CEO Kamran Mallick and others offer their solutions
Kamran has also written an article about how he first left home and wonders whether disabled people today are in a position to do the same, given the current shortage of suitable accessible housing.
Government report to UN on our rights is ‘clutching at straws’: Last year the UN looked at the UK’s record in implementing the Convention on the Rights of People with Disabilities (CRPD).
Its conclusions were very critical, so much so that the UK government were asked to respond to some of the criticisms within 12 months.
Their report has now been published.
Equality Act animation: As part of the Right to Participate project, funded by the Legal Education Foundation, DR UK has created a short animation about the Equality Act http://righttoparticipate.org.
This is a ‘light touch’ introduction to the Act. It’s primarily aimed at disabled people who might not usually think of themselves in those terms or be aware that they’re covered, for example young people, students and people who’ve recently acquired an impairment.
Please watch and share the video as widely as you can.
We asked to be included in these stakeholder workshops and this is the update from Karl McLeish NHS North Cumbria Clinical Commissioning Group Tel: 01768 245 486 www.northcumbriaccg.nhs.uk
What is important for this process?:
- Engagement must be two-way. This must not be an exercise is simply gathering information, and feeding it up the chain in a one way manner;
- Links, Networking and help in forging links and networks. Know who the ‘unusual suspects are’ – Include the ‘unusual suspects’;
- Face to face meetings, but for a reason (i.e. not just a meeting without a clear need or purpose);
- Use of existing frameworks, but not duplicating work or initiatives that are already exist: needs to be complimentary to the ongoing works of other organisations;
- productive – Build round existing networks – feeding into existing channels and mechanisms;
- Innovative: early Involvement and input on key issues;
- Timeliness: the process must be relevant to the context of the issues;
- Inclusive: involve all stakeholders.
- Relationships at a strategic level: it may be important to have relevant, key system leaders ’in the room’.
What isn’t so important/What would the ‘forum‘ like to avoid?:
- To be talked at and/or having one person representing and/or speaking for all;
- Hierarchical system – requires a mixed approach to make effective group/network – both formal and informal;
- Forgetting to ‘go out’ to where people are who may have vital input, or may be able to offer solutions;
- People/providers/organisations being missed out, who ought to be included;
- Lack of understanding of the ‘blocks’ or challenges that the third sector face in the middle of organisations (business swift);
- A focus on paying for/commissioning a service, without understanding the impacts on people/service users and patients;
- To be advised of policies after decisions have been made;
- To be pressured or panicked by too many meetings;
- Underestimating the importance of the NHS being ‘seen to listen’, and wanting to be different.
Ideas around ‘Virtual’ Input:
- Forums for feedback on specialist issues;
- A chance to share intelligence and navigate through challenges;
- Virtual forum – something like ‘mumsnet’?;
- ‘art of hosting’ – to harvest community feedback;
- SurveyMonkey – Perhaps limited in its power and too rigid, but also useful to monitor the impact of change ate key time points.
- ‘Gateway’ type facilitation of information/input/engagement, so that the right ‘people’ are included in the right areas and, equally, so that they can raise issues In the appropriate way;
- ‘Survey type’ monitoring of the frontline impacts that come from the implementation of strategic decisions made at the SLB;
Ideas/mechanisms for ‘two way’ engagement:
- Themed events, triggered by items on the SLB Agenda;
- Relationships at a strategic level: it may be important to have relevant, key system leaders ‘in the room’;
- Presenting ideas/feedback directly to the SLB;
- Bespoke Engagement – meetings triggered for a reason, involving the right people and the right resources;
- Brainstorming/’think tank’ type sessions around key areas of concern;
- Early Involvement;
What the forum would like to do and achieve:
- Improve impact, align activity and enhance problem solving resources;
- Balancing system priorities with community’s priorities;
- Feed into the systems that influence change;
- An opportunity to fill in the missing jigsaw pieces highlighted at other boards and groups. Bringing together the missing bits that complete that bigger picture;
- Have a community based wellbeing platform, with the right conversations happening in the right places;
- Establish virtual connectivity in both directions: i.e. Stakeholders >< Virtual connections and Bespoke Engagement system >< SLB (participation, Involvement and Engagement of Stakeholders P.I.E.S.)
- To use existing networks, knowledge and relationships and to utilise expertise and experience;
- To influence knowledge and relationships;
- Planning – to have a planned timeline;
- To use assessment of the impact on the patient/service/service provider as a measure of success (two way engagement? Perhaps with survey monkey);
- To create an opportunity/platform for bringing back good examples;
- To create a forum which can update on filing the gaps (and highlighting where those gaps are to SLB, and suggest solutions).
Questions, suggestions and potential challenges:
- How often does SLB meet? What would the requirement for the stakeholder forum meeting frequency be?;
- How is this going to be different from ‘forums’ that already exist?;
- How will this forum impact the SLB? Will it respond in proactive ways, reactive ways, or will it be a mixed approach?
- How will it ensure parity? Is only the ‘strongest voice’ listened to?;
- Existing providers are not sure who to approach to make the health population aware of the services that currently exist and are on offer – will this forum provide some useful clarity?;
- Trust – there appears to be some question as to credibility/what a healthcare professional ‘looks like’;
- No real way to tell whether stakeholders are being listened to;
- Only includes the ‘usual suspects’ (currently);
- Although this process should evaluate and contribute to the decisions that are made at SLB (the decisions that are already on SLB Agenda), it might also include a mechanism for creating awareness around the ‘hot topics’ as experienced by front-line providers/stakeholder organisations;
- Timescales of meetings around decisions: feeding into the board before decisions are made – how would that work around all the timings and agendas of the SLB meetings – is the process reactive, proactive, or do we need a mixture of both?
- Why can’t the Third Sector simply be represented on the SLB? (this is being actively explored as an option)
- To remain Flexible, I.e. to constantly review our approach to make sure it is working;
- To consider using pre-existing forums and networks, I.e. Action For Health;
- To trial a ‘virtual group’ for feedback – this could be an email/survey monkey based tool;
- To hold bespoke meetings on an issue which will involve members of SLB;
- To develop a mechanism to collect ‘intelligence’ and/or feedback about challenges/ successes around implementation.