‘Think carer!’ says Pat Vinycomb

Pat Vinycomb, Local Ambassador for Dorset of Carers UK, spoke at the recent Carers Meeting at Royal Bournemouth Hospital.  The meeting was organised by the Patient Engagement Team and coincided with the launch of pages for carers on the Trust’s website.

Pat’s keynote address ‘Think Carer: Supporting Carers in a hospital environment’ invited the carers present to reflect on when it was that they realised that they had become a carer and the feelings associated with the realisation that life would never be the same again.  In the hospital environment, said Pat, carers should be recognised for their skills and knowledge, feel valued, have the right information and advice and the choice to say no.  She outlined the challenges facing carers who need to understand what has happened and where to go for further help and advice.  She also explained the anxieties that carers may feel: ‘Can I ask staff a question and/ or challenge?’.

It was clear that Pat spoke from her own experience as she described a tendency for carers to feel they must hide their emotions and the inner conflict they can feel.  She emphasised to the nursing staff present that little things really do mean a lot to carers: somewhere to be private, comfortable seating, refreshments, as well as kindness, empathy and hope.  Above all good communication from hospital staff and being kept up to date is important for carers.

L-R Pat Vinycomb, Ambassador – Carers UK and Marion Summers, volunteer advocate – Dorset Macmillan Advocacy

Pat’s presentation finished with a summary of the many types of practical help and support available to carers in Dorset, Bournemouth and Poole and she urged carers to remember that their own health matters. The carers then took part in facilitated discussions to generate feedback for the engagement team.

Later I talked with Pat and with our volunteer advocate Marion Summers (also a carer) about the support that Dorset Macmillan Advocacy can provide to carers.  Carers can be empowered by advocacy support to know their rights and feel more in control.  I was grateful to the Patient Engagement Team to be invited to the meeting and to be able to provide an information stand.  After Pat’s talk I personally had a much better insight into the challenges facing carers when the person they care for is staying in hospital and we hope to involve Pat in our volunteer training in future.

During national Carers Week from 8 June Jo Lee, Senior Macmillan Advocate at Help and Care, and other Dorset Macmillan Advocacy staff attended a number of events to raise awareness of our service among carers.  The Carers Week campaign this year focused on Carer Friendly Communities and produced this useful Checklist tool for carers which includes a section on Health: Carers Week 2015 Checklist.

Kathleen Gillett, Dorset Macmillan Advocacy

 

Advertisement

Little things make a world of difference

This week, as you may know, is national Carers Week.

I’ve been working in the voluntary sector for a long time now and Carers Week comes round like clockwork amongst the other special awareness raising weeks we see. But this year Carers Week  for me is different because for the first time I identify myself as a carer. It’s especially significant for me because caring is currently my main role and everything else is taking a back seat.

The sudden dislocation from normality, from what was once my real life, has been quite a difficult thing to come to terms with. Whilst none of us like to think of ourselves as labelers we all do it, especially to ourselves. You know the kind of labels I mean: wife, mother, daughter, sister, hard worker, dog-lover, hen-keeper, keep-fit lover, wildlife enthusiast, keen gardener, etc, etc… The difference now is that because everything apart for my new caring role is taking a back seat many of the previous labels I gave myself are left behind with a tinge of regret and a hope that they’ll be picked back up at some time in the future.

Don’t get me wrong, I’m a carer first and foremost because I have such love for my son that I could never think of doing anything other than looking after him at a time when he needs me most. I’m sure the majority of carers are the same. They don’t care out of a sense of duty but out of love.

The issue is that caring comes with a whole range of problems for the person doing the caring. The first thing to be affected is work. Understanding employers, like mine, are worth their weight in gold. To know that  you have the support you need whilst you try to get onto an even keel is great. I’ve been very fortunate in the support I’ve had and continue to have but I know that many other carers are not so lucky. So suddenly, the main thing you do during your working week takes a hit. You miss out on the things you love most about what you do, you miss the people you work and mix with, even the regimentation of the working week is gone.

Yesterday I should have been in London attending the Cancer, Older People and Advocacy programme management board meeting. Instead I was writing this at a desk in my son’s hospital room in Glasgow. I missed out on an opportunity to meet up with good friends, on feeling productive in a constructive way, on contributing to what’s going on and in supporting delivery partners in any way I could. My working week has been halved so I can try to deal with life and work but my image of myself as a dynamic and supportive partner in the job I do is taking a hit.

Then there are the things I love to do but now miss; to walk my dog – she’s currently temporarily re-homed with my dad; to let the hens out in the morning and put them in at night – they’re at home and I’m not; the keep-fit is a distant memory as I’m rarely at home when it’s on; the wildlife isn’t quite the same out of a window in the west end of Glasgow as it is in the Highlands where I live; my garden isn’t getting the love and attention I usually give it so there’ll be fewer colourful flowers to sooth the soul in the summer ahead. Everything is taking a hit.

All of that means I’m not getting the exercise I’m used to, I’m not eating as well as normally and I’m feeling less good about myself as a result. With no prospect of life returning to any sense of normality in the foreseeable future I can see the need to find ways around that and to ensure I take better care of myself.

The biggest hit by far though at present is the distance between where my son is being treated and home. The care he’s receiving is exemplary, the staff are wonderful and facilities second to none but it’s not home. My husband is at home while we’re here, it’s not ideal.

So now I’ve told you how it is for me as a carer. My life is currently quite different from how it used to be. My main focus is and will remain my son and getting him well again. That’s what it’s all about for carers – the wellbeing of the person they care for.

This Carers Week unlike the last, I have a definite image of what it is to be a carer. I see a swan, reasonably serene on top of the water but paddling frantically underneath. So if you’re in a position to do something, no matter how small, to support someone with caring responsibilities this week, next week or any week, then please do it because little things make a world of difference.

Our Cancer, Older People and Advocacy work is all about supporting older people affected by cancer and many of them are carers like me. Advocacy can make a really positive difference to the lives of those it supports. If you live in one of our service delivery areas and you’d like to make a difference then please do get in touch. You’ll find contact details on the About Us page of our blog.

Marie McWilliams, OPAAL National Development Officer

 

 

Supporting carers – additional funds secured by Dorset Macmillan Advocacy

Dorset Macmillan Advocacy, a new partnership between Help and Care, Dorset Advocacy and Macmillan Cancer Support, has been successful in its bid for funding to extend its help to carers.

‘We recognise that carers of people with a cancer diagnosis need support in their own right – separate from that being provided to the older person with the cancer diagnosis.  We also understand that carers who have their own cancer diagnosis need additional support to consider the impact of their diagnosis on their caring role and the ongoing needs of the cared for person’ says Keri Harrison, Access and Community Support Manager at Help and Care.

Keri Harrison

Evidence gathered locally during the pilot phase led the Dorset Local Cancer Champions Board to seek additional funding for a carers support planning service over and above the three year’s funding already secured from regional Macmillan Cancer Support.   The team was successful in an application for one year’s funding to the Dorset Carers Support Project Fund facilitated by Access Dorset on behalf of Dorset County Council and Dorset Clinical Commissioning Group.

These issues were highlighted for Macmillan Project Coordinator Kathleen Gillett recently when reading the Carers Trust report on mental health Triangle of Care . The section on Carer Support which seems to apply equally to people affected by cancer underlines how important it is to offer ongoing support to carers: ‘It is rarely sufficient to carry out a carer’s needs assessment in a one-off interview. This may be the first occasion when the carer’s interests have been addressed and their primary need may be to off-load and explore better care for the person they care for, rather than their own needs.  As rapport and confidence in the process develop there will be a more meaningful exchange of information and insights.’

Jo Lee

Jo Lee, Senior Macmillan Advocate says ‘Using person-centred thinking tools we will work with carers affected by cancer to identify what is important to them, what changes they want to make to their life, how they want to be supported and who they want to be supported by.  We recognise that with improving survival rates, carers affected by cancer may be caring for a long time and need ongoing and consistent support.  We also understand that carers support needs will change depending on where they, or the person they are caring for, are on their cancer journey.’