Category Archives: C4CC Co-production Group Member

Human Rights Day 2017

My mother died suddenly when only 55 years of age I was just 20 and suffering long term after effects of a road traffic accident.

Her nurturing legacy to me could be simply summed up in two basic principles, which I have tried to pass on and uphold in my own life:

Firstly; “Always remember you are no better or worse than anyone else” and just as importantly; “Do unto others as you would have done unto you.” Give and show respect – remember no one is perfect!

As time has gone by I have realised that these principles were a good foundation to understand human rights, with the UN Charter in 1948 setting the framework that in my view is as relevant and needed today as it was nearly 70 years ago.

AT THIS TIME, it is worth following the link and reminding ourselves of The Universal Declaration of Human Rights: http://www.un.org/en/universal-declaration-human-rights/

The Declaration, with its broad range of political, civil, economic, social and cultural rights, is not a binding document unfortunately, but it has inspired more than 60 Human Rights instruments that constitute an International Standard of Human Rights.

So what is the relevance to us in our daily lives?

Very simply, in part, it is to expect to be treated with respect, fairness, dignity and equality, without discrimination.

We do all have a responsibility and duty to others too and we do all need at times to protect the rights and freedoms of others.

I would argue that currently, for those living with the “outcomes” of long term conditions as a patient, service user &/or carer, that our basic human rights are too infrequently considered.

It is challenging enough in those circumstances, with rare pleasures mixed with pain, disease, hurt, frustrations and exhaustion.

Why is it that we can be made to feel inferior, alone and sometimes stigmatised, even discriminated against, by the very public sector services that are there to support and help improve our health and wellbeing?

That the “personal assets” we bring, through co-production working together, into our treatments may not be taken into account.

I would make the case that this situation could be improved for health and wellbeing by enshrining Parity of Esteem as a human right.

It would ensure equal treatments for all conditions, whether physical or mental health, with training, funding and commissioning distributed accordingly.

It would be about looking at the ‘whole person’ and their needs, which I believe would improve OUTCOMES with sustainability both to individuals, the caring services and of course, the health economy.

In these challenging times around the world, it is all the more important that we all stand up for Equality, Justice and Human Dignity.

After writing this blog and remembering my mother…… I now am counting my few blessings, but hope others find it thought provoking.

 

Evelyn Bitcon (Carer, Advocate & voice for the vulnerable, as well as having own long term health conditions), C4CC Co Production Group member

 

International Volunteer Day (IVD) 2017

Volunteering comes in many different forms; it might involve spending a few hours per week helping out at your local hospital or a charity shop, or a much bigger time commitment that becomes virtually a full-time job.

On International Volunteer Day I applaud everyone who takes the time and trouble to contribute their bit to society and would encourage others to do the same.

For very personal reasons, I fall into the latter category, devoting between three and four days per week in my various roles with Carers UK, Carers Trust in my home county of Cambridgeshire and as a member of the C4CC Co-production Team, spreading the word about the vital importance of our ‘Three Cs’ in involving people and their community in their own care.

I’m a campaigning volunteer, raising awareness about plight of the hidden army of unpaid carers, who like me devoted a very large part of their life to looking after the one they loved.

For me, it was my wife Sheila, who I looked after, for much of the time without seeking support, for over 12 years until she died 20 months ago.

Her passing has made me even more determined to spread the word about the support that is out there and also to campaign for more, recently marking Carers Rights Day by visiting parliament to both lobby and inform MPs.

For me volunteering has become a drug, as I know many people out there are struggling to cope with the pressures of caring to the detriment of their own health and welfare, many in near poverty and unable to cope.

If I can help to raise this awareness more openly, then I believe my contribution will have helped to make a difference.

After all, I have acquired specialist knowledge from over 28 years of caring, a lived experience that gives me an insight into many of the pitfalls a carer is likely to encounter on their caring journey.

There is much fantastic help available out there, but in my volunteering role along with others of the same thinking, we have helped to shape and streamline many of the available services so they are more user-friendly and cost effective.

This means the much-reduced council budgets have a better chance of fulfilling the needs of those with long-term conditions and their carers.

I am now 73, retirement for me is not an option I wish to consider, neither do I want to just wander around trying to find something to occupy the time aimlessly. I want our great country to be the very best at what we are good at…leading by example!

I don’t criticise anyone who chooses to spend their time that way, but my view is that if you have a wealth of skills and experience that can be used to the benefit of others then it is a tremendously rewarding experience and one I would thoroughly recommend.

I have made so many new friends and acquaintances through my work with three fantastic organisations and I hope to play my part for many years to come because despite the Care Act of 2014 enshrining much needed rights into law there is still much to be done.

 

Richard Cross, C4CC Co-production Team member

Reflections of a long time carer

I have been a carer for nearly 20 years, with firstly my mother, and then my husband developing Alzheimer’s and becoming dependent on me for their support.

My husband is now in the advanced stages of this cruel disease and I am drawing on all my experience as a former nurse in the NHS to fill in the gaps in his care.

Many people are in the same situation as me, but do not recognise themselves as carers, but when an individual becomes increasingly dependent in relation to their physical or mental health needs, there is a gradual realisation that the caring responsibilities are taking over more and more of their lives and the relationship changes.

This is perhaps when they first see themselves as carers and it can be daunting.

You are worrying about them, how best to support them and how you are going to cope.

It is a new world for most of us and vital that the carer and the cared for are supported at that stage and that there are easy pathways to relevant information.

One of my roles in life is to volunteer for the local Alzheimer’s Society and I chair an Experts by Experience peer support group at our local Caring Café.

The carers that attend our support group share their experiences of what information, help and support that they have received have been most beneficial. Also, what has been lacking or has not worked for them.

As a member of the C4CC Co-production Team, it has become clear to me that applying the principles of ‘Three Cs’ of the coalition; Better conversations – Stronger communities – Partners in co-production; provides people with long term conditions and their carers with that vital support in testing times.

Here are my thoughts, based on experiences over these many years.

Conversations

One of the recurring stories that arises is that when a carer and cared for person initially attend their GP surgery with short term memory problems, there may be a real need for signposting to appropriate support even before a firm diagnosis is made.

The experiences of carers are variable and some carers feel really let down at this initial stage, not knowing where to turn next.

Where a GP is able to signpost sensitively and is much more proactive and helpful the support is really beneficial.

But, information alone is not necessarily enough. I well remember a new member of our carers support group coming into a meeting with a large bag of leaflets and booklets. She sat down and said ‘Can anyone help me sort all this out?

The local authority had provided her with copious information appropriate for a carer looking after someone with dementia, but no other support in sorting and selecting the information to support her particular requirements.

This is where our group and others like it can add value through our conversations.

Growing strong communities

It has been said by a member of our carers’ group more than once that the experience has been ‘life changing’.

Quite often, carers come with trepidation into our group. They feel so vulnerable and at sea and don’t know what to expect.

The sharing of experiences; the informal advice and the emotional support which is sustainable over the long term, is invaluable and we all benefit.

Within the café there are also professionals to enlarge the conversations.

The Caring Café is supported by our local authority because of the excellent level of services it provides in a community setting.

Under the Care Act 2014, local authorities must offer or commission services that aim to prevent or delay the need for support and to promote wellbeing both for people needing support and their carers, and I know we are able to do this in the Caring Café as do similar groups all over the country.

Co-production

One of my best experiences of the right conversations and co-production at the right time was when I requested a home assessment for my husband, who was becoming increasingly frail at the time and in danger of repeat falls.

The GP referred us to the local CCG Response and Rehabilitation Team.

The professional team that assessed my husband over several weeks treated us as equal partners during the process, were willing to experiment with equipment and handling issues and set in course a mutually agreed programme of self-funded support.

This was co-production at the right time.

Now, my husband is receiving continuing care, co-production has been limited to the relationship developed between the individual carer support worker and myself, the package of care being put in place through a provider agency.

The standard of care delivered is very much dependent on my personal monitoring of the carer support workers.

With my health service background I can fill the gaps in care, but others are not so lucky, which is why C4CC has a vital role to play in its promotion of the co-designing and co-delivery of services and rigorous monitoring of commissioned services for people with long-term conditions, particularly where they lack capacity.

 

Margaret Dangoor, C4CC Co-production Team member

Twitter: @mpdrichmond

How Self Care Changed My Life

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The reality of living, for those like me with multiple long term conditions, is that self care is both inevitable and a vital part of our treatment. We don’t live in hospitals and we don’t have a home full of medical staff. We spend the vast majority of the time caring for ourselves, often with only the support of family and friends. The changes I saw when I took responsibility for my ‘self care’ for me were life changing.

This isn’t to say we are sent out into the world without information and support. I am so grateful for the expertise and experience of the NHS team that support me. My time with these key people in my life is limited, sometimes far less than I want or need. For me this lack of contact led to a need for quality time with ‘my experts’.  That’s the first step to good self care for me, making the most out of the limited contact we have with health professionals who have full knowledge of our conditions and combining that with my own health goals and lifestyle expectations. For me, being proactive and assertive in those conversations gives me vital knowledge to have confidence in managing my illnesses. Not everyone wants to have these conversations, I need clinicians to understand that that’s a big part of what I need from a consultation to allow me to get by successfully until I see them again, a prescription simply isn’t enough.

I’ve used these interactions to better manage a life threatening illness in the last year. Firstly I had to become really aware of my illness and how it affects me, what triggers changes in it and how it responds to treatments.

I then took this knowledge of my own illness, my body and my skills to the doctors who care for me. For example, one of the main reasons I end up in A&E has been an issue with my heart rate. So I made sure that in one of my consultations with the cardiologist we talked about what he regarded to be a dangerous rate for me (as opposed to paramedics and A&E doctors that don’t know me) and what action I can take to monitor my situation and when to act and call 999.

That conversation, alongside other similar conversations about managing my symptoms, including staying hydrated and managing nausea, gave me all the knowledge and more importantly for me, the confidence to manage my symptoms at home more effectively. On a day- to-day basis my illness now impacts my life much less than it used to and even the extra time it takes each day to monitor my symptoms and do as I need to rather than as I want to is worth it! I have reduced my emergency admissions to hospital from 10 in one year to 0 in the last year! That’s 10 less 999 calls, 10 less ambulances, 120 hours less spent in A&E and 30 nights a year that I’m not spending in hospital each year. That’s nothing compared to the hours I have back in my life to use for living, not just surviving. I’m not cured, my condition is not notably better, I just manage it well!

 

Katie Clarke-Day, C4CC Co-production Team member

Twitter: @notjustaheadach

Person Centred Care and Co-production- the ‘Get Real’ Factor

We are now on a countdown to NHS Expo 2015, where the Coalition for Collaborative Care will have a strong presence. One of our co-production group members, Christine Morgan, is part of the Expo’s People’s Panel and today writes for us about the importance of person-centred care and co-production…

This year I’m attending EXPO 2015 as a member of the People’s Panel. This is a group of people who are patients or carers and who have lived experience in learning to deal with their own long-term conditions or as a carer, and who have also become expert in navigating the sometimes complex world of health and social care.

The fact that the planning for EXPO has included patients and carers is demonstrating the drive and commitment of NHS England and the Five Year Forward View to develop “..a more engaged relationship with patients, carers and citizens so that we can promote wellbeing and prevent ill-health”.

This new relationship will be exemplified by members of the People’s Panel to show how working together, or co-production, can happen in practice between patients, carers, and organisations and hopefully usefully bring a ‘reality check’ to the many conversations and debates that will take place over two days.

Working together or true co-production is not as easy as it sounds in reality. Often I have found myself being used for a consultation or engagement event where I know that nothing I say will change anything and all that is really required by the organisation is an endorsement so that they can ‘tick’ the patient/carer/public engagement box.

That kind of exercise is so short-sighted as no one really gets anything positive from it- the organisation doesn’t get the insight they need to be really effective and for me, as a patient expert, all I’m left with if a feeling of frustration, having had my time and limited energy wasted.

I’m pleased to say my experience with EXPO15 and the Coalition for Collaborative Care, where I am a co-production member, has been positively different. Specifically in the planning of the event:

  • Patient/carer views were listened to seriously, discussed and acted upon;
  • Proactive advice and suggestions were welcomed;
  • Patient/carers were valued as equal members of the planning team.

Equally I have respect for the professionals who have key roles in planning such a high profile, national event with tight deadlines, a zero budget and small team. This is indeed evidence of developing better ways of true partnership and really working together from design to implementation.

It has been said that this year’s EXPO 2015 “..will be challenging, and will deal in reality not theory”. As a person who has long-term conditions, I deal with the reality of that every day which includes chronic pain, limitations in mobility and lack of stamina on the negative side but also includes positive insight into personal resilience, into health and social care organisations and how simple changes could make big difference to people’s lives.

So I’m really looking forward to taking part in the two days in Manchester, my home city, on 2 and 3 September and particularly working in partnership with other members of the People’s Panel, the Coalition for Collaborative Care and the people I meet.

I’m looking forward to listening, learning and hopefully influencing too so that I can feel I have made a positive difference in the drive to ensure that true partnership working becomes embedded across health and social care so that person centred care can become a reality for everyone.

In other words the ‘get real’ factor – hope it helps.