Jooly's Joint: people with MS supporting each other

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Jooly with Cherie Booth

Smiling sun Our visit to Downing Street!

In late 2003, I (Julie of Jooly's Joint) received an invitation in the post to attend a reception hosted by the Prime Minister's wife Cherie Booth QC at 10 Downing Street.

At first, I thought it was a joke! But I read the leaflet that accompanied the invitation, and it seemed that it was for real! The reception was in honour of the MS Society's 50th anniversary.

So, the big day came: 10 December 2003. I live in Peterborough in Cambridgeshire, so I travelled down to London during the day.

Actually, the day had already been rather hectic. In the morning, I'd been in the BBC Radio Cambridgeshire studios in Peterborough doing a live interview for BBC Radio Scotland about a new 'accessible' talking phone project that RNIB is involved in (I work for RNIB). After the interview, Radio Cambridgeshire asked if I'd come back the next morning to do the same interview for their station. I said 'yes', though it would have to be from RNIB's London office as I was staying down there overnight after a reception at Number 10. 'Oh, can we interview you about that instead?!', they said! So I agreed to be by an ISDN line (radio quality phone line) by 8:20am the following morning to do the interview (fool!).

So anyway. I eventually arrived in London and caught a cab to the hotel that I'd booked in Victoria. 'What you down here for?' asked the cabbie. 'I'm going to Downing Street to meet Cherie Blair', I replied, casually. Needless to say, he was impressed!

I checked into my hotel, had a little rest, and ventured out again. I hailed a cab in the street. 'Downing Street please'. 'Well that's a first!', said the cabbie. 'It's a first for me too!', I said, laughing. The cab dropped me at the gates of Downing Street about 30 minutes before we were due to go in.

I stood around for a bit, getting cold. Then I spotted Mike O'Donovon (Chief Executive of the MS Society), Ken Walker (Marketing Director of the MS Society) and Sarah Phillips (Chair of the MS Society) walking towards me. We decided to go for a quick drink until it was time to enter Downing Street.

At 5:45pm the big moment arrived! Before we could get into Downing Street itself we had to go through a security check. This was a bit like going through security at an airport. Metal detector, frisking, baggage check, etc.. Once we had proved who we were and had been cleared by security we were allowed to walk into Downing Street itself.

This was a magical moment! It being close to Christmas, the street was decked with lights and a huge Christmas tree. Downing Street is quite short and number 10 is a lot closer to the main gates than I had realised. The door to number 10 was already open so there was no need to knock!

We stepped inside and were greeted by the staff, who were all very nice. The first thing we noticed was a HUGE Christmas tree in the foyer. We handed in our coats and were asked to head upstairs.

'Heading upstairs' meant going up that famous staircase along whose walls are displayed photographs of all the past prime ministers (there must have been a lift somewhere as several people using wheelchairs were at the reception).

When we got upstairs we were directed to a beautiful reception room and offered a drink (red wine for me!) and canapes. There were about 40 of us at the reception, a mix of people with MS, MS Society folk and key supporters of the society (ie donors).

I moved away from the crowd to chat to a lady I recognised from the last time a group of people with MS had been near Downing Street - campaigning for beta interferon! As we stood chatting, a door to our left opened, and a lady came up to us and said 'would you like to meet Cherie?'. We looked passed her and there was the first lady, dressed in an immaculate white suit. We couldn't believe we were actually going to meet her!

My friend spoke to her first, and then it was my turn! I introduced myself to Cherie and told her that I'd had MS since I was 19 and that I represented a community of people with MS called 'Jooly's Joint' that use the internet to communicate with each other. Cherie asked if I worked at the MS Society, and Sarah Phillips the MS Society Chair said 'oh no, Julie does this from her home'. Cherie shook my hand. I was struck, as I often am, at how petite people from the media are in real life!

Cherie greeted all 40 guests individually and after we'd said 'hello' to her we gathered in this second reception room to chat. I met lots of very nice people, many of whom are clearly very committed to supporting us, despite not necessarily having a direct link with MS themselves.

Once she had met everyone, Cherie made a ten-minute speech, congratulating the MS Society for 50 years of service to people with MS and calling on those in the room who were in positions of influence to do all they could to support the effort to find a cure for MS. It was during this time that where I was and how I came to be there really hit home. I thought of all the members of Jooly's Joint around the world, and how privileged I am to be asked to represent our group on occasions like this.

It also reminded me of how I felt when I was first diagnosed with MS and how far I have travelled in my life to get to where I stood at that moment. On the one hand I felt the overwhelming responsibility as a representative, doing a job. And at the same time I felt all the emotions of being a person with MS, a condition with no known cause or cure. It was rather moving.

When Cherie's speech was through, Sarah Phillips said a few words. Cherie then apologised for needing to leave, but she had a carol concert to attend. However, she added 'but you are welcome to stay and have a good look around'.

So we did! My friend Hilary Freeman and her partner Steve Somerset were there, and the three of us decided to explore. We saw a presentation case from President Nixon that contained moon dust from the first lunar landing. We also went into the main banqueting room where Nelson Mandela had recently dined. I was particularly struck by the original art on the walls, that included a number of portraits depicting famous people from the world of medicine.

All too soon the evening was over. As I stepped out into the cold night air, I wondered what might happen to bring me to Downing Street again, or whether this would be my only visit. It was a memorable night. Thank you all for making it happen.

The following morning I was interviewed on BBC Radio Cambridgeshire as planned, answering questions about what it was like inside Downing Street...!

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