just google it

Doing an internet search for information is common place. Many of us watch TV with the smartphone to hand to check social media or to find out where that actor appeared before. We search online multiple times a day, for directions, recipes, news or gossip. We search for health information too.

When my mum first got her diagnosis of Progressive Supranuclear Palsy in 2007, health information wasn’t quite as widespread as it is now. We came back from the clinic- while she put on the kettle I switched on the computer. The first thing I found was wordy and technical, but even a glance at the words was enough to know something nasty was afoot. I turned off the computer, drank the coffee and left her to the bus.

She could still get a bus then. Walk a few steps to the car, get into and out of the seat, walk easily to the correct spot in the bus depot, climb steps, show her ticket, walk along the narrow aisle and get into another seat. From this distance, such mundane actions are remarkable. My fiercely independent mum eventually lost all such abilities, and many more. That quick glance at the computer screen had set off warning flares in my mind, but I didn’t yet know.

favourite Ma

Further searching, without a hovering mother, brought other information. Vision and cognitive problems. Falls. Potential loss of  speech, swallow, balance, mobility, continence and any ability to communicate.  Progressive Supranuclear Palsy is a devastating diagnosis, for the patient and her family. There is no treatment and no cure, just an ever creeping paralysis. The internet told me all those things before we went to visit my mum’s GP.

He’d got a letter from the specialist (who’d given us the 3 words and no other information). “Ah,” said the GP, “I don’t know anything about it. You may just google it.”

He didn’t suggest that we pull our chairs round his screen and  search together. He didn’t suggest that he research or chat to the neurologist and get back to us. But it didn’t feel like he was giving us the power. It felt like he was washing his hands of us.

Without knowing anything about Progressive Supranuclear Palsy, he left my mum to find out the implications of her diagnosis for herself. He didn’t know that I’d got information that I couldn’t bring myself to tell her. We were relying on him to be a guide, a support, an interpreter between us and the world of progressive neurological conditions.

And he never was any of those things. He was meant to be the key person in coordinating her care (2 speech therapists, occupational therapist, physiotherapist, dietician, several eye specialists, 2 neurologists, the feeding tube surgeon, the social worker, the domiciliary care provider, eventually a nursing home, many emergency admissions due to falls, the palliative care team) but he never seemed interested.

He may well be overworked. He may well be terrified of the unknown. But, for us, he was the person we had to keep chasing. The person who never darkened the nursing home door until her final week.  We referred to him as Dr Useless, so much so that the Brother had to phone me from the council office where he’d gone to register our mother’s death, “What is Dr Useless’s real name?”

The man who thought it was ok for a patient with a serious neurological illness to ‘just google it’ to find out anything at all. The man who didn’t think of what the impact might be. An experienced GP who didn’t pause at ‘Progressive’, or see the terrified mother and daughter before him.

Yep, turns out I’m still angry.

strike a pose

-Will you talk about the work you did?

-I will.

-Would you be available to chat to any journalists that turn up?


None turned up.


6 weeks later…

-Are you still ok to talk to a journalist?

-Yes, of course.

-She’s from the regional Sunday tabloid.

-Oh, um, well, ok. That’s grand.


panic, panic, panic


The interview happened by phone last week. I was in pjs, despite having hardly slept with anxiety. I’d written pages of notes of what I wanted to say (what good things can happen when the system listens to patients and works with us). The journalist knew what sort of a story she wanted (ill woman with young family and her tragic, doomed, mother). We proceeded to the dance.

The article will appear eventually. The nonsense is over. The journalist and editor will do what they need to do to sell their paper. My input is over and all I can do is wait for it all to appear, and vanish.


It turns out there is always more.

The photograph they had wasn’t ‘good enough’ (we may have different criteria for that). A photographer is on the way. The house is tidy. I am dressed. My face has been drawn on. I’m hunting out the extra anti mad tablets.

How did I end up here? I’m so much more comfy being anonymous in pjs.




tourism and rare disease- Parliament and PSP

Once I got over the horror of an early start, a flight, trains, and all the security, I got very excited. I was like a child in a toy shop. I was at Parliament, surrounded by history, politics, pomp and weirdness. It was fascinating; so much symbolism, so many statues, and all of it political.

The Central Lobby has four huge mosaic panels representing the saints of England, Wales, Scotland and Ireland. We entered from St Stephen’s Hall under St Patrick, so I noticed how long he’d been there. Since 1924. Recent, indeed. Significantly, this was after the war of Independence, the Treaty and the creation of the Northern Ireland state- this parliament no longer ‘ruled’ the day to day of most of Ireland when St Patrick went up. Symbolism wins.

Do even the English remember Mansfield or Seldon? Their statues are there alongside the Pitts, Fox, Burke and Henry Grattan- 180 years later, what parliamentary figures would be commemorated in this way?

Westminster Hall is a remarkable space; completed in 1099, it’s a medieval building in everyday use. Brass plaques in the floor mark events such as the lying in state of monarchs, or a speech from Mandela.

We weren’t allowed into the House of Lords. But the Irish accent isn’t the threat it once was, and Ditzy and I make a good white haired, big eyed, team. So the guard let us in to gawp at the splendour. Walls of 22 carat gold leaf, designed to make the wood panelling of the other house seem plain and common place, worthy of the lower classes.

Another chap, with velvet and gold plate ornament, gave us passes to the gallery, and we got to watch MPs doing their thing. Amongst the smarm and the awkward questions, there was a question about access to drugs for rare disease. I was so excited to understand what they were talking about. The biggest disappointment of the day was the notice for those accessing the gallery, who are

... not allowed to clap, or applaud, or to make any other kind of demonstration or disturbance.

I was unusually quiet and well behaved, despite bobbing up and down as much as some of the MPs, just so I could see who was there. I didn’t see Dave, but his side kick, Nick the Deputy Prime Minister was in action. Three of the 18 Northern Ireland MPs were there, but chose not to join us for our reception.

The sight seeing was a side event to the day. The reception ( wine, canapés, chatting, shoe laces) was the big deal. We were there to help raise awareness of Progressive Supranuclear Palsy, the rare neurological condition that took my mum, Dudley Moore, and many others.

Three quarters of people with PSP are misdiagnosed. There is no treatment and no cure. People lose their ability to balance, walk, talk, see, swallow, or communicate. Cognitive processing can be impaired. It is a slow disintegration. The event on Tuesday was to launch a tool to communicate some of that. Scott’s grandad had PSP, and Scott came up with the simple, genius idea of using a fraying lace to demonstrate that disintegration. That is Ed’s Lace, the reason for us all being gathered together.

I met PSP people I feel like I’ve known for years- the power of social media- and many others. There was a great community, almost family, feeling. Even without laces, we are bound together by shared experience. We know. And when Sheelagh spoke, she had us all in tears. We know. We embraced the recently diagnosed, but not newly ill. We know.

A small number of MPs attended, listened and learned. The knowledge will stay with them, hopefully influencing their behaviour. Awareness raising and relationship building are vital, but are only a start. We need our politicians to be taking action, to be creating solutions for the problems of supporting PSP and other rare disease patients,  to be questioning why NHS England doesn’t think it needs a rare disease implementation plan, to be making sure that effective drugs get to the people with rare diseases who need them.

Thanks to the fabulous Hannah Daykin for some of the pictures: watch her family’s video. Keith and Sheelagh’s video is here. These are all amazing people, properly awesome, and I was delighted to spend time with them on Tuesday. Also, I met Peter on Tuesday, and now this song makes me cry too.