Author Archives: Caron Lindsay

Grayling: I’d rather face 56 SNP MPs than 57 Liberal Democrats

Yes, you read right. Chris Grayling did say that, not on lobby terms to a journalist but in front of the entire world in the Commons this afternoon. 

His comments came during the debate on the Government’s plans to railroad through English Votes for English Laws secured by our Alistair Carmichael. He used an obscure Commons device to discuss the process rather than EVEL itself. 

The Government basically chickened out of the vote today. They were heavily defeated by 291 to just 2. The vote isn’t binding but the Government’s plans sounded more ill-considered and incoherent as the debate wore on.

A vote …

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Social Liberal Forum holds hustings for Farron and Lamb

The Social Liberal Forum Conference ended yesterday with a 90 minute hustings between Tim Farron and Norman Lamb. Both men turned up dressed in very similar clothes. As I tweeted at the time, if they had been women, we’d never have heard the end of it.

It was a lively event, not least because they did allow questions from the floor that hadn’t been submitted in advance – and they allowed supplementaries. The candidates were both put under more pressure than they had been at any other event I’d seen so far. There is nothing wrong with vanilla ice cream, but if the other hustings were that, then this one was Chilli and Dark Chocolate ice cream – rich with flavour and full of warmth. When I say warmth, I am not referring to the temperature in the room. The air-conditioning was broken, leading Nick Barlow to make one observation:

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Top of the Blogs: The Lib Dem Golden Dozen #421

Welcome to the Golden Dozen, and our 421st weekly round-up from the Lib Dem blogosphere … Featuring the seven most popular stories beyond Lib Dem Voice according to click-throughs from the Aggregator (-, 2015), together with a hand-picked quintet, you might otherwise have missed. There may be one or two from the week before, as the Dozen didn’t appear last week.

Don’t forget: you can sign up to receive the Golden Dozen direct to your email inbox — just click here — ensuring you never miss out on the best of Lib Dem blogging.

As ever, let’s start with the most popular post, and work our way down:

Posted in Best of the blogs | 1 Comment

Alistair Carmichael wants Orkney and Shetland to control their share of the Crown Estates

st Andrews flag saltire scotland Some rights reserved by Fulla TAlistair Carmichael has tabled an amendment to the Scotland Bill which would devolve control of the Crown Estates revenues to local level for Orkney and Shetland and, interestingly, the Western Isles. The Independent has the story:

Mr Carmichael said that the SNP administration is “in practice and instinct a highly centralised government” and did not want “devolution downwards”. Under his plan, the islands would have their own commissioners deciding how Crown Estate land is run.

He added that the Crown Estate owns and manages the seabed, which is of great importance to islands that rely heavily on the fishing industry, with salmon and trout farms. Mr Carmichael said these farms have to pay a percentage of their turnover to lease these areas, which is “a tax by any other name”.

This should present a challenge to Angus Brendan McNeil, the SNP MP for Na h-Eileanan an Iar which includes the Outer Hebrides, because he should support the extra revenue for his local community. He won’t, of course, because the SNP likes to keep everything nice and centralised in Holyrood. Even if he violently disagreed with their policy, he would be forbidden from criticising it in public thanks to particularly draconian standing orders by which nationalist MPs have to abide.

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The leadership candidates in the Sunday papers: Compassion for migrants to ageing hippies and winning back the South West

sundaypapsThere’s quite a bit from Norman Lamb and Tim Farron in the Sunday papers today, all of which shows off our two leadership contenders at the best, challenging orthodoxy with fresh liberal thinking based on principles. The Labour leadership candidates (with the exception of Comrade Corbyn) might like to try that sort of  thing sometimes. It really can be quite invigorating.

The Observer highlights Tim Farron’s call for the UK to take 60,000 migrants as part of an EU arrangement to help these desperate people who have been fleeing horrible circumstances.

“We should support this because we are decent people. Our party should not have a mixed message about this. We should not turn people away,” he said.

The former Lib Dem president has written to David Cameron to say the UK should be proud of its record on taking in refugees, citing the admission of many thousands of Ugandan Asians who were expelled by President Idi Amin in 1972.

The policy had benefited all parties, and proved to be in the country’s economic interest. “First and foremost it is about compassion, but also there is enlightened self-interest,” Farron said.

The article also quotes Norman Lamb, who spoke very movingly on Any Questions last week, urging compassion for children who had been stuck for weeks in a refugee camp. He said:

Lamb said he had invited former party leader Paddy Ashdown and Baroness Williams to take part in a new foreign policy commission to address issues such as migration flows and climate change, that were now among the most serious facing political leaders across the world.

On migration, Lamb said: “The truth is that no one has a clear idea about how to address this challenge. We have to map out a way forward, otherwise there is a risk we as a society take a wrong turn with disastrous consequences.

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A 4th July Bonus

Best wishes to all our American friends as they celebrate their special day.

We were talking amongst ourselves on the LDV team, wondering what the best way to to mark the occasion would be. We decided that it just had to be with some clips of the best programmes ever made. And the first one, suggested by Nick Thornsby,  even has tennis. After the way Mr Murray has just dragged our emotions through a mangle, that’s only appropriate.

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SLF Conference – the tweets #3 Political pluralism

Here’s the third set of tweets from the SLF Conference. Gordon Lishman chaired a session on political pluralism. David Howarth, former MP for Cambridge, looked at election data, Sue Goss from Compass looked at how progressive parties might work together and Tom Spencer, former Tory MEP who argued that a liberal party should alternate between left and right.

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SLF Conference – The Tweets #2

Here’s our second look at tweets from SLF Conference covering late morning and early afternoon. It’s a great day. Remember you can watch live below:

First up a session on how the Lib Dems rebuild featuring Sal Brinton and Mark Pack:

But at the end…

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SLF Conference – The Tweets #1

The Social Liberal Forum is having its annual conference today with the theme of Rebooting Liberalism. It’s being held at the Amnesty HQ in London, so at this point, after the awful news this week about surveillance, we should probably say that we hope our friends at GCHQ enjoy the proceedings. The event sold out some weeks ago. Our own Mary Reid has been very involved in the organisation. SLF Conference is always lively, interesting and really makes you think.

The agenda looks brilliant.

Claire Tyler will give the William Beveridge Memorial Lecture. Julian Huppert and Bridget Fox will revisit Liberty,  Prateek Buch and Naomi Smith will tackle Equality, and Cllr Liz Green will focus on Community with Michael Meadowcroft.  Chris Nicholson will be drawing on his experience as a SpAd in a session on Reforming Government with Daisy CooperMark Pack and Party President Sal Brinton will be asking ‘How do we rebuild the Liberal Democrats?’, while David Howarth will discuss political pluralism with Sue Gossfrom Compass and academic Tom Spencer. 

In addition, people attending the conference will be voting in advance on the topics for four round table discussions, there will be fringe meeting on Positive Money plus a Youth meet-up.

The day will conclude with a Leadership Hustings with Tim Farron and Norman Lamb.

I am very sad not to be there, but I have asked everyone to tweet loads so I can keep an eye on what’s going on, and I’ll put up a selection of the most interesting tweets throughout the day.

You can also watch the live stream which is a bit erratic, but great to have:

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Miriam Gonzalez Durantez argues for quotas on boards – but warns that inclusive culture is also necessary

Remarkably, we’ve seen a consensus between our two leadership candidates that some for of action such as all women shortlists or zipping in list contests, is necessary to do something about the party’s shockingly poor record on diversity.

Miriam Gonzalez Durantez, as reported in the International Business Times, has called for quotas on company boards:

I am a reluctant supporter of temporary quotas. Intervention, on a temporary basis, is probably the only solution to make a big change. It irritates my legal mind because obviously discrimination cannot be sorted with another discrimination, but I’ve come to the conclusion that unless you make an intervention, change will to be difficult.

She did go on to say, though, that where there must be no tokenism. Companies must allow women on their boards to play a full part:

Boards have a specific role: controlling what the situation is for shareholders and the community as a whole, that is why they were created. Too many boards are either not diverse or diverse nominally and not inclusive. They sit women around the table but they don’t participate in discussions, those boards are not fulfilling.

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Carmichael accuses the Tories of abuse of process over English Votes for English Laws

Alistair Carmichael had a right old go at Leader of the House Chris Grayling over English Votes for English Laws. The Conservatives have chosen to take the easy route and merely amend Commons Standing Orders rather than have the House of Lords, where they don’t have a majority,  scrutinise it.

Questioning Mr Grayling in the House of Commons, Mr Carmichael said:

If there are not to be two tiers of MPs in this House after these changes, what on earth does it mean to have a double majority at Report stage? I have to say I think it is an outrage that the Government are seeking to drive ahead with a fundamental challenge to the constitutional integrity of this House as the Parliament of the UK through Standing Orders. If the Leader of the House really thinks these proposals will bear scrutiny, he should bring forward primary legislation for proper scrutiny both on the Floor of this House and in the other place. If he thinks he can do that, let him come ahead and do it.

Grayling told him he was welcome to bring his proposals forward. After the exchange, Alistair said:

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Report shows how extensively this country fails vulnerable children

Yesterday the UK’s Children’s Commissioners published a joint report to the United Nations Committee on the Rights of the Child. It makes very grim reading. If a child is poor, bullied, suffers mental ill health, gets involved with the criminal or immigration systems or suffers the effects of domestic violence, this country simply does not provide them with what they need. I seriously recommend that you read the whole thing because a few headlines from the press doesn’t quite give the flavour of the extent to which we should be ashamed of ourselves.

We can have all the arguments we like about austerity measures and to what extent they were necessary but this report provides an extensive list of the sorts of problems that we liberals should be putting all our energies into solving. Top of my list would be access to justice and reversing the cuts to legal aid that prevent children being properly represented in cases that affect them. Second would be mental health. The range of things that affect young people’s mental health is huge and we need to look at prevention as well as treatment when things do go wrong.

Posted in Op-eds | Tagged , , , and | 8 Comments

Catherine Bearder MEP doesn’t need men telling her what’s important

I have to say that I am incandescent with rage at a profile of the only Liberal Democrat MEP Catherine Bearder which has appeared in the New Statesman. The implied conclusion of both the journalist and the several Liberal Democrat sources quoted seems to be that Catherine is a lightweight who needs the back-up of a group of men. She’s criticised for not pursuing their agendas and her own concerns, on massive issues like wildlife and human trafficking are dismissed by the journalist as pet projects.  Yes, that’s right, protecting vulnerable people from the brutal exploitation of modern slavery somehow is a niche issue? Not in my world.

The thing is, despite the drip-drip of patronising criticism that comes through the article Catherine comes out of it really well. What I get is an impression of a politician who, heaven forfend, is well-connected to her constituency and the people she represents. Heaven forfend! It’s hard to do that across a single UK Parliamentary seat. Across a region? That’s more challenging and Catherine does it well. That is just as important as legislative achievement.

Dave Keating, the journalist laments that the lack of political heavyweights:

The Liberal Democrats lost their Brussels heavyweights like Graham Watson, Andrew Duff and Ed McMillan-Scott.

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It’s so easy, when you are live-tweeting an event, to give the wrong impression

Last night, Ethnic Minority Liberal Democrats held a hustings for the two leadership candidates, Tim Farron and Norman Lamb. They covered the event  brilliantly on Twitter.

Covering an event like that is really challenging – things move on so quickly and you can easily make a mistake. I know that. I once tweeted that Vince Cable was in favour of low pay when he had very clearly said the opposite.

So it was good to see that they corrected a very similar error that they had made last night. They had tweeted that Tim had said that equality was immoral and stupid. Well done to them for sorting it out quickly.

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Isn’t it fun when Labour and Tory peers whinge about the Lib Dems?

The Guardian highlights a bit of Labour stirring in the House of Lords. Lord Campbell-Savours used a question on Lords reform to suggest that the Liberal Democrats had fallen back so far in the General Election that they shouldn’t get new appointments.

My Lords, just for the record, both Labour and the Conservatives increased their share of the poll at the last general election. How can we justify adding to the existing 101 Liberal Democrat Peers, who already form 21% of the whipped party-affiliated membership of this House, when their party secured only 7.9% of the poll, winning only eight seats on a collapsed national vote at the general election? Surely, if we are listening to the people, even UKIP and the Greens have a greater claim on new peerages—otherwise, we bring this House into disrepute and, indeed, ridicule.

Leader of the House Baroness Stowell replied:

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Willie Rennie and Greens’ Patrick Harvie support launch of Open Rights Group Scotland

WR  at ORG Scotland LaunchScottish Liberal Democrat Leader Willie Rennie and Greens’ co-convener Patrick Harvie both attended the launch of Open Rights Group Scotland yesterday. Immediately after First Minister’s Questions, they gathered in a smoke-filled Garden lobby (the cafe was having an indoor barbecue to celebrate the start of the Summer holidays) to talk to journalists and pose for photographs.

As the SNP Government ramps up its plans for a National ID database that’s more powerful and intrusive than anything Labour ever came up with, and as Edinburgh plans to integrate all its CCTV systems, there is a lot for the digital rights organisation to do.

Willie Rennie said:

The way in which we work, socialise, buy products and use services has changed dramatically since the digital revolution.

But government and politicians have responded at a snail’s pace and have failed to ensure the rights of citizens, consumers, journalists, businesses and children are protected online.

I am delighted to be part of the launch of Open Rights Group Scotland. It will help drive digital rights up the agenda in Scotland so that we can build a fairer society which enshrines civil liberties in every part of our lives.

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LibLink: Alistair Carmichael: Cameron’s shocking example of self-serving politics is biggest threat to union

Alistair Carmichael has written a devastating attack on David Cameron in today’s Herald, accusing him of “psychopathic ruthlessness” and of “one of the most egregious pieces of self-serving politics ever seen” in stoking up English nationalism. It’s strong stuff.

At 7am in the morning of September 19, following the referendum result, the Prime Minister emerged to thank the people of Scotland for sticking with one of the most successful political unions the world has ever seen and to reaffirm his commitment to its future. This was his time to tell the people of a continuing UK that he understood what had

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Guardian revelations about Clegg, Cable and the Lib Dem election catastrophe

Well, as the ballot papers get sent out in the leadership election, the Guardian publishes a series of revelations tonight about the last year of the coalition and the aftermath of the European elections.

Apparently Nick Clegg was ready to resign in the wake of the European elections and was talked out of it by, among others, Paddy Ashdown and Tim Farron. Certainly at the time, the feedback that Federal Executive members gave at our post Euro disaster meeting was that there was no appetite in the wider party for a leadership election, but they did want things to change.

Vince Cable, it transpires, did know about the Oakeshott polls.

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Liberal Democrat leadership: So what happens at a Lib Dem hustings meeting?

newcastle bridges by ratherbewalking
I was peeved when I saw that the Scottish leadership hustings were taking place this coming Saturday as I knew I had to be in London for a Federal Executive away day. In a moment of madness, though, I decided that I would make a trip to Newcastle for the hustings last Friday night. I am, after all, the FE liaison person for the North East region so it would be good to meet people there.

After a 90 minute train journey, a delicious Chicken Fajita in a place called Zapatista and a quick look at the Centurion pub next to the station to see the amazing Victorian tile work (honest), I headed to the Station Hotel a full hour before the hustings started. It was already buzzing with people. They were expecting so many to turn up that they had had to arrange a bigger room.

I managed to get one of the last seats in the room even though I’d got there so early. Strictly speaking, I might have spent too long drinking gin in the bar with my friend of two decades, Jo, where I also found out something about Tim Farron’s past that I didn’t know. I am now hunting down the evidence and when I find it, you will be the first to know. It’s not scandal, unless you count crimes against fashion in that category. 

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Lib Dem Leadership: Big name endorsements for each camp as ballots are posted to members

Ballots for the Liberal Democrat leadership hit members’ doorsteps from tomorrow.

With that in mind, both camps have unveiled big name endorsements. From the Lamb campaign, he kind of unveiled it himself in his inimitable style:

It isn’t the biggest surprise in the whole world. During our Spring conference, he was pretty critical of Tim. Paddy becomes the latest party establishment figure to support Norman Lamb.

At the start of the campaign, Tim Farron unveiled a list of over 100 parliamentary candidates who had supported him. On Monday he announced the support of over 200 councillors, council group leaders and elected mayors like Dorothy Thornhill and Dave Hodgson. The Westminster Bubble may have gravitated towards Norman, but Tim has significant grassroots support.

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Brian Paddick upsets the Daily Mail over drugs policy. Oh what a shame.

Brian Paddick is not some hippy anarchist. He used to be the Assistant Commisioner of the Metropolitan Police for goodness’ sake. He knows, therefore, about what works in trying to tackle drug addiction. And it’s not the futile “war on drugs” which successive governments have insisted on waging. Prohibition just doesn’t work. All the evidence points to that. Drug users who need help should get it through the health service not the prison service.

Funnily enough, the Daily Mail doesn’t much like his plan to amend the government’s ridiculous law banning legal highs.

This afternoon, Brian moved his amendments to the Bill. Here’s his speech in full:

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Top of the Blogs: The Lib Dem Golden Dozen #420

Welcome to the Golden Dozen, and our 420th weekly round-up from the Lib Dem blogosphere … Featuring the seven most popular stories beyond Lib Dem Voice according to click-throughs from the Aggregator (14 – 20 June, 2015), together with a hand-picked quintet, you might otherwise have missed.

Don’t forget: you can sign up to receive the Golden Dozen direct to your email inbox — just click here — ensuring you never miss out on the best of Lib Dem blogging.

As ever, let’s start with the most popular post, and work our way down:

Posted in Best of the blogs | 1 Comment

LDV’s Sunday Best: our 7 most-read articles this week

7 ver 4 fullMany thanks to the 12500 visitors who dropped by Lib Dem Voice this week. Here’s our 7 most-read posts…

David Laws joins CentreForum (85 comments) by The Voice

Labour leadership: who should Liberal Democrats be cheering on? (82 comments) by Joe Otten

Cllr Fran Obosrki MBE writes…Why I rejoined the Liberal Democrats (90 comments) by Fran Oborski

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Norman Lamb’s campaign removes two volunteers for alleged misuse of personal data for negative push-polling

So just over 24 hours ago, I was sitting in a packed room with hundreds of Liberal Democrats from all over the North East Region. We had all been treated to an excellent two hours of debate between leadership candidates Tim Farron and Norman Lamb. They had each shown the best of themselves. Norman’s thoughtful, intelligent analysis and ideas, his determination to give a voice to the voiceless, Tim’s tub-thumping, barnstorming adrenaline rush of a speech underpinned with good ideas and things that would make Quentin Letts from the Daily Mail hyperventilate. It was great. We truly do have two hugely talented contenders.

Tonight, though, a shadow has been cast over the contest as Norman Lamb has had to suspend two volunteers for misuse of the membership data. The Telegraph has the story:

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Jim Wallace on Charles Kennedy: We loved you, we miss you, will we ever see your like again

I was expecting last night’s memorial service for Charles Kennedy at Glasgow University to be a fitting tribute to the man, to be dignified and formal. It was all of those things, but I didn’t expect it to have such a strong under-current of emotion and affection. A series of heartfelt tributes were punctuated with beautiful music and poignant poetry and the whole thing was woven together perfectly by the University Chaplain, Rev Stuart MacQuarrie. At each stage, he talked very personally about the aspect of Charles’ life that the next item would reflect.

What was so clear was the enormous love and affection that senior management, students and academics alike had for Charles. The students clearly felt that he had their backs. The Presidents of the Glasgow University Union and the Students’ Representative Council both spoke about his approachability and his work on their behalf.

First Minister Nicola Sturgeon and Secretary of State for Scotland David Mundell sat together. Each did a reading. Willie Rennie read a poem. Jim Wallace gave a superb tribute to Charles, talking about their experiences as Highland MPs and how they all travelled to each others’ constituencies to get a shared understanding of the challenges faced by each area. He also spoke about the example Charles in his manner towards others and how we could all learn from him:

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Why it’s worth being a member of the Liberal Democrats

The New Statesman is doing a series of features on membership of political parties. They feature Lizzie Jewkes, who was responsible for the current incarnation of the policy of raising the tax threshold. “Meet the ordinary political party member who will cost the Treasury £4 billion a year” says the headline:

She was in the auditorium during Nick Clegg’s first conference as leader of the party, in 2008. He mooted that £20bn of savings could be spent on reducing the rate of standard income tax.

“We all duly voted for this,” Jewkes explains. But discussing Clegg’s idea with a friend and fellow party member, Jewkes concluded they should be using those savings to raise the income tax threshold instead.

“It’s like a lightbulb went on,” she says.

Later that year, when Vince Cable – then the Lib Dems’ Treasury spokesperson – visited a regional conference Jewkes was also attending, she ran her idea past him. “He came as a keynote speaker and I just nobbled him when he was having a cup of tea,” she laughs.

“I said to him, ‘is there any reason we don’t do this?’ and he said to me, ‘ah, that’s my ultimate dream.’”

Jewkes wrote her idea up as a policy motion and submitted it to party conference in the summer of 2009. The party didn’t even wait until that conference to announce it.

“The next thing I know, Nick is on the news saying, ‘we have a new tax policy – first £10,000 tax-free’ And I thought ‘hold on a minute…’” says Jewkes of first discovering her policy had been taken on.

“I was just completely astonished,” she recalls. Yet she still never imagined it would become government policy.

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Memorial service for Charles Kennedy to take place at Glasgow University tonight.

Photo by Liberal Democrats Charles Kennedy

Photo shows former Lib Dem Leader Charles Kennedy at the Conference Rally, Bournemouth Sept 09. Credit Alex Folkes/Fishnik Photography

Six days after his highland burial, Glasgow University holds a memorial service for Charles Kennedy this evening at 7pm in its Bute Hall. Charles had a long association with the university as undergraduate, Glasgow University Union President and, until recently, Rector for two terms. In fact, as we reported soon after his term ended, he said that he missed being Rector of the university more than he missed being leader of the Liberal Democrats.

From the university’s website:

The service will start with an Academic Procession, which will be piped in by Donald Campbell, who retired earlier this month as the University’s official piper, and his brother, Alastair Campbell, a close friend of Charles Kennedy.

Tributes will be paid by, among others, Professor Muscatelli, and the Presidents of the Glasgow University Union and the Students Representative Council, Rory Slater and Breffni O’Connor.

Brian McBride, a member of the University Court and former CEO of Amazon UK, will also pay a personal tribute. He was a close friend of Charles and was a President of GUU in 1975 when, as a judge of the English Speaking Union, he first met Charles when he was a school debater.

Family and VIPs will arrive via the South Front entrance of the University; access for all other friends and colleagues will be via the North Front.

A live audio feed of the memorial service will be relayed via the University’s website.

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A row with a Labour MP and a wonky crystal ball

Facebook is now giving you more reason to waste time on it by reminding you what you posted on this day in previous years. I’m mostly enjoying it. A random bit of cheek from the much missed Andrew Reeves made me laugh and cry yesterday. Today I was reminded about a post on my own blog from five years ago.

Tom Harris, then MP for Glasgow South had been whinging something chronic about the (then) new IPSA, the body which administers parliamentary expenses, set up in the wake of the scandal. I wrote a post in response which said, basically: Tom, you have a point, but this is how public services generally treat ordinary, often vulnerable people. I then went off on one giving many examples of such horrors.

There might be some who take a bit of perverse pleasure in seeing MPs being treated like that. I’m not one of them, although I have no objection to them having to provide documentary evidence of things. You try claiming benefits or tax credits without providing supporting documents and see how far you get. Most MPs, as I have repeatedly said, are good people – but then so are most people who deal with the Department of Work and Pensions, the UK Border Agency and HM Revenue and Customs – and nobody should have to put up with poor systems and bad service.

One thing IPSA hasn’t done yet is lost any confidential data, unlike HMRC under Labour where the details of Child Benefit claimants went missing.

I do have a slight concern about the way in which one MP spoke to the IPSA officials (apparently interns, who have no power in the organisation) when asked to file his children’s birth certificates:

It is not yet known whether the IPSA official in question is even physically capable of performing the act the MP then requested of him, or even if it is legal within the United Kingdom.

.I wonder if this is a bit of poetic licence on Tom’s part but if a benefit or tax credit claimant had spoken to a Government official like that, they would have suffered some fairly severe consequences and perhaps been denied service, however understandable the grievance. I also think Tom would be the first to stand up and defend the relevant Government agency in that instance.

Tom was none too pleased and took me to task in the comments:

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++ Breaking News: Who are our new deputy leaders in the House of Lords?

This caught our eye on Twitter this afternoon:

That’s right. The Parliamentary party in the House of Lords was electing two deputy leaders.

And, hot off the Twitter press, here is the result:

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LibLink: Greg Mulholland MP: Drugs for ultra-rare diseases

Yesterday, Greg Mulholland held a Westminster Hall debate after constituents told him that the provision of drugs for their son was under threat because he has a very rare condition. You can read the transcript here.

People with rare conditions not only have to fight their illness, but also, because it’s rare, there is unlikely to be much in the way of research. Friends of mine have raised tens of thousands of pounds for research and to support other families after their baby son died of a rare neurological condition. Another friend set up a charity that brings together sufferers of her daughter’s rare disease from around the world every year and has worked to bring together specialists from various parts of the world.

There are huge question marks over funding for drugs for rare conditions after NHS England’s system was found to be discriminatory. Greg wrote for Politics Home explaining the issues and setting out what he wants the minister to do:

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