A monkey on his back: A Photo shoot, the Thatcher Room and an Old Friend

We were back at Westminster last Wednesday. This time at Portcullis House. Roch was asked by the MND Association to speak at the All Party Parliamentary Group meeting to launch the findings of their audited Report on Specialist Palliative Care in the UK. One of the main findings from the Report is that MND is a 'hidden' disease with few health trusts even knowing how many people with MND live in their area. Of course Roch's experience has been different. His job was to bring his positive experience of palliative care to the meeting - how it could be for everyone, throughout the country. At present it is a matter of chance and to coin the over-used phrase - a postcode lottery.

There were nerves, of course, but he had written his speech himself, so knew exactly what he was to say. This had been vetted by the Association (and checked and timed by me, his editor!). His principle concern was that his voice would hold out for the duration. A slight complicating factor was his busy schedule on the day itself.
A telephone interview with a journalist from the Independent took place in the morning and we then waited for the arrival of their photographer. In the meantime we carried on as normal with shower and dressing - extra attention had to be paid to the grooming process, of course. Our cab was due to arrive at 3.00pm and time marched on, with no sign of the photographer arriving. He arrived with less than an hour to spare but wasted no time in producing a range of what I can only describe as 'pop-up' lighting equipment from a small case, rather in the style of Mary Poppins. He was pleasant but professional and in no time he had transformed our sitting room into a photographic studio with Roch as his model.
"Look into the distance Roch", "Now to the right," "Now to the left," "Again, into the distance Roch," "Straight at the camera now..." The taxi arrived as he was setting up outside for shots at the front door but the driver waited patiently until eventually the 'shoot' was over.
The final picture appeared in the Independent's sister paper, the 'I' on Thursday 21st November. Roch looks set, determined and a little bit wide eyed and scary. But I guess that must have been what the guy was going for...as he chose it from about 500 shots.
The journalist who interviewed Roch was Sarah Morrison and she used him as a case study to back up her article on the launch of the Report. The article was accurate and well written.

"To the right, to the left, now into the distance..."

Anyway, I tried my best to encourage Roch to save his voice for Westminster. But he's such a friendly, chatty person - it was difficult. First the photographer and then the taxi driver!
Eventually we made it to Portcullis House with time to spare and met with Alison Railton, Public Affairs Manager at the MND Association. We had met before, in 2010, at the original APPG inquiry, in which Roch also took part. As always, Alison made us both feel comfortable instantly. We walked with her along corridors lined with original artwork - paintings of individual politicians past and present and huge canvases depicting Parliament in session. I could have spent longer examining the details but duty called and after a short briefing in one of the public coffee areas, it was time to make our way to the Thatcher Room - much to Roch's amusement. Had he known, he remarked, that the meeting was to take place there - well, he might have reconsidered...
Personally, I think the Iron Lady looks equally perturbed to find herself in a photograph with Mr. Roch Maher...

"True Blue" meets The Main Man

Once inside, we were introduced to Chris James, Director of External Affairs at the MND Association and Dr. David Bateman, National Clinical Director for Neurology. Greg Mulholland MP, Vice-Chair of the APPG on motor neurone disease was there to chair the meeting - but warned us all that the Division bell was due to be rung at any minute - which of course would herald the departure of every MP in the room - and so it proved. Happily, the bell did not interrupt Roch's speech, which went off without a hitch. He made us all proud.
To read a report of the meeting and see some of what Roch said, use the link below, which will bring you to the appropriate MND Association website page.

With Roch, Chris James to the left of the picture, Dr. David Bateman on the right.

Friends, Old and New

The departure of the MPs (boy that bell is LOUD) left a smattering of individuals in the room present for the remainder of the meeting. I found myself taking notice of one woman in particular. She seemed familiar. There was something about her confident, decisive manner and the passion with which she spoke...
After the meeting closed, we were approached by a woman whose husband had died of MND just last February and who works in the office of one of the MPs. We spoke together for some time. It was good to talk to her but such meetings leave me with a strange mixture of feelings - MND wife meets yet another MND widow.
As we spoke, the woman I had noticed earlier came over with her companion and work colleague. I was overwhelmed with such a strong feeling of familiarity. I knew her first name was Liz - her second name? Garrood, she told me. Immediately I turned to Roch and rather rudely interrupted him in my excitement,
"Roch, it's our Liz!"
That will live in my memory as one of those golden moments, as we renewed our acquaintance with Liz Garrood.
Roch had begun his speech earlier by recounting how, after the shock of diagnosis, he had called the MND Association and within a week, they had sought him out. Their then Regional Coordinator arrived at the house to meet with us within days of his call. We will never forget her. In a time of shock and confusion, misery and grief, she brought a positivity, an energy and an empathy to our house that day. She talked to us frankly, answered all our questions directly and discussed with us the burning question of the day - how to tell our 14yr old and 17yr old that their father had MND. I remember her walking round the house with encouraging words about how much space there was to adapt. She told Roch that she was more worried about his cholesterol levels than his MND! She was the first person to make me feel that we just might be able to live with The Monkey. We never met her again, and she moved on about six months later. But we never forgot Liz Garrood. She calls herself 'The One Hit Wonder'. She now works as Care Coordinator in Hertfordshire. All I can say is, Lucky Hertfordshire!

Liz Garrood, left. Her colleague Anna is on the right of the picture.

It had been a full but tiring day for Roch but as we made our way past the oddly jovial police officers guarding the entrance to Portucullis House into the cold night air at Westminster Bridge, we had to agree - it had been an interesting day and a successful one. Well done Roch, we are so proud of you.