In New York

In New York

Sunday, 29 May 2016

All Party Parliamentary Group on Carers - The Carer's Strategy

Back from Clare I had to shift my focus sharpish. Before my holiday I had been asked by the MND Association to speak at Parliament before a joint meeting of the APPG on MND and the APPG on Carers about my experience of caring for Roch. Rt Hon Alistair Burt MP was to be in attendance and the purpose of the meeting was to discuss the Governments Carers strategy. It was a chance to put forward concerns and highlight the issues. On the flight home I began to think about what to say. I knew I had five minutes to speak and both the MND Association and CarersUK had requested that if possible, I include a number of points they felt it was important to stress to the Minister, both points of information and issues of concern. I decided that I would try to weave our experience around these points.

For an excellent report on the meeting I can do no better than refer you to the following link from the CarersUK blog. I hope I presented, in the time allowed, at least some of the universal concerns shared by my fellow carers, and not just those caring for someone with MND.

An impressive number of MPs attended and the meeting was chaired by Baroness Gill Pitkeathley.

I think so many MPs came along because so many have been affected by a caring role. One MP referred to the 'Army of carers out there' and it was generally agreed that more and more people are unexpectedly faced with the prospect of caring for a family member. I was happy to hear that there was understanding about how at the moment of diagnosis, life changes forever for the person who is about to be catapulted into a life as a Carer and MPs agreed that speed is of the essence in offering support and information at this early stage.
Afterwards I had the pleasure and privilege of meeting with Barbara Keeley MP, Shadow Minister for Carers, who spoke so eloquently during the meeting about Carers' needs.
With Barbara Keeley MP and Richard Arkless MP
With our Tom, who supported me throughout the day. 
In the Shadow of Big Ben
The Minister speaks

I spoke also with Richard Arkless MP for Dumfries & Galloway, who recently lost his mother to MND. There is a shared understanding and mutual compassion between people whose loved ones have MND. After the meeting we hugged. He told me that my speech had resonated with him in all respects. All around me I saw the human face of Parliament and indeed Alistair Burt made this very point. We think of Westminster perhaps as a place very removed from us but the reality is that MPs and Peers are human too and the issue of caring touches so many - some disclosed their own personal experiences around caring. For all of us Carers out there this is a good thing, because it means it is an issue close to their hearts and they will want to make sure the new Strategy on Caring does right by Carers. 

The Minister announced that the public consultation was to be extended by a month, so there is still time to have your say and a chance to influence the Government's strategy on Carers.

A Carer's Break

It's been busy lately and I've been lucky. In mid May I had a break from caring when Roch's long awaited respite stay at Princess Alice Hospice came round. For months those with my best interests at heart (and Roch's) had been encouraging me to take a break and get away, to do something just for me. I wanted to, but it took me a long time to get it sorted. The hospice stay was arranged well in advance (before Christmas) and I found what I thought would be the perfect holiday for me - a painting course in one of my favourite places in the world.

The course was called 'Abstracting the Landscape' and was set in County Clare, in the West of Ireland at The Burren College of Art, an extraordinary place which blends in perfectly with the limestone landscape of the Burren.
I can't describe how beautiful this place is and how much it means to me. For years our parents brought us as children on holiday to Ballyvaughan, a small village on the shore and when our children were young teenagers, Roch and I brought them there, to clamber over the rock and swim at the beach in Fanore.
In fact, the last time we were there was in 2010, the year after Roch's diagnosis. There was a strong current at Fanore and he struggled to bring himself ashore - the weakness in his legs and arms meant it was no longer safe for him. I remember that he fell on the wooden walkway, on the way back to the car. It was the beginning of the end of that kind of family life.


So I guess everywhere there were memories for me, happy and sad. Perhaps it shouldn't have come as a surprise to find myself overcome on Day Two. I seldom cry but something in me seemed to break and I found myself unable to stop. I hardly knew why or what had caused it. Our teacher told me later that she thought I was abstracting the landscape from within as well as without. I was unprepared for the intensity of the experience. I think almost without realising it, I had tapped into something deep inside and out it came. The studio was open 24 hours a day and so although I took myself off on Tuesday afternoon, back I went with Maura in the evening to make up for lost time and managed to produce some work.

Abstracting from Within

The level of dedication, skill and hard work in our group of Abstract painters was impressive and I was proud to be a part of it.

I cannot praise our teacher highly enough. Her skill as a painter is phenomenal. I found some of her work breathtaking. She makes it look so easy! We could not have had a more encouraging or approachable teacher - or one with more knowledge of her craft.
Last Day Selfie with Maura and teacher Cora

Surrounded by the beauty of the Burren landscape and the support and friendship of the group (not to mention the loving presence of my sister, Maura) I couldn't have had a better break.