Oh my heart!

A fascinating few hours with the CEO of the British Heart Foundation on Monday, though it did make me think about whether I'm getting enough exercise (as he gently reminded me). I took a lovely leaflet from reception, “put your heart into walking" which is worth getting. And as I mentioned I do a lot of walking with the Hound.

I met for lunch with Simon Gillespie who has been a longstanding and valued member of ACEVO for many years (he was previously at the MS Society). This is one of the country’s biggest charities. Over 3000 staff and turnover above 200 million. It plays a vital role in the research that goes on into discovering the causes of heart problems and working on cures. Much of the advances in heart research has turned strokes and heart attacks into a long term condition as opposed to what carried you off into the next world is down to this wonderful charity. As I remarked to Simon, too often the NHS claims all this research as its own. In fact a third of all medical research is carried out or funded by charity.

They have great offices in Mornington Crescent, ironically in an old cigarette factory (a glorious Art Deco building). And as they have a big staff group over 2 massive floors they have their own cafe and outside balconies looking out over North London to the glories of Hampstead and Primrose Hill (but couldn't see Ed Miliband's house)! So lunch was at his office which is a change as most of my members don't have such a facility!

Simon has been in post less than 2 years but has been reviewing and revising their strategy, recently appointing new top directors. As the country understands better the importance of prevention and the care of people with long term conditions the work of charities like BHF become more important. There is also crucial work to do in how to reorganise the NHS to provide top quality care hospitals.  The reorganisation of London stroke services which moved to treating heart conditions in just 8 hospitals and not all 30+ London A+E showed the importance of rationalising cardiac services across the country. The idea that you need to be treated in your nearest A+E as opposed to the best centre for your condition is one of those myths we need to bust. And we need fewer hospitals and more resources in community and prevention.

And on health generally worth mentioning that all our Winterbourne deliberations are up on the NHS. England website; terms of reference, Membership and first meeting notes.  We agreed that we would make all our discussions accessible. So see them here.

Censoring charities - the Electoral Commission and the Lobbying Act

So we have now had the 'guidance' from the Electoral Commission on the Lobbying Act for a couple of weeks. Long enough to consult widely on it and begin to reflect on how we might comply. "Incomprehensible" is one way to describe it. More specifically, it is helpful in places but based on a poorly drafted Act that is wrong in principle. 

As ACEVO have long warned, the Lobbying Act will affect our historic right to campaign if we let it do so. That means our job between now and the election is to go about our usual business of campaigning and awareness-raising so far as we can. The 292 pages of guidance published to date leave several areas of uncertainty that we will do our best to clarify in the next few weeks, such as the rules about joint campaigning and the details of the new constituency spending limit of £9,750.

Five Electoral Commission staff attended a meeting on Tuesday at ACEVO Towers organised hosted by Bond, ACEVO and others involved with the Commission on Civil Society. It was attended by 120 charities and campaigners. There were some heated exchanges between the Commission and the attendees as the regulator tried and failed to clarify guidance that was intended to make things clear! They are to be commended on their willingness to engage with the sector - indeed some of the Commission have a background working in the third sector. But there is still a long way before we come close to fully understanding every part of the guidance. 

We must do our best between now and 19 September and take the approach that the Lobbying Act is indeed not meant to catch campaigners doing their usual work. Small charities in particular, or anyone else who is unsure or unused to speaking out in public, should be mindful of the Act but shouldn’t let it deter them from pursuing their mission as they would do at any other time.

If you have any questions about the Act’s implications the best course is always to contact the Electoral Commission directly, on their website or via pef@electoralcommission.org.uk.

I note also my letter in February from the Prime Minister, David Cameron, who wrote to me to reassure us that the majority of charities and campaigners would not be affected by the new Act.

We were told that government wanted more transparency and not to limit charities’ ability to speak out in public. Ultimately the proof of what exactly the Act really does affect will come after its regulatory period starts next month. But for now we’ll continue to campaign for clarity about its regulations and to replace it after the election with a workable and fair arrangement for non-party campaigners.

Remember too that this is not the only threat we face. The Charity Commission are consulting on ludicrous new proposals to make us all declare ‘campaigning’ spend. Anyone who knows what charities' purpose is understands that advocacy is but the other side of the coin to delivery. More worryingly there is thought to be a desire, by some, to revise the current entirely sensible Commission guidance on campaigning (‘CC9’). This is an agenda that appears to be ideologically-driven rather than about better regulation. Of course we will see what they do but we should be aware that our historic duty to speak truth to power is under threat.

And finally; you might ask what happened to me and Newsnight yesterday. Well, I was bumped in favour of Jacob Rees-Mogg of all people. Hardly the stuff of in-depth analysis. On a happier note I can report that Radio 4 is doing an analysis programme to go out next Thursday evening which does examine Big Society - what happened? Worth listening to. I did an interview for them today.

Newsnight

May be interesting tonight... They are doing a piece on "What happened to Big Society". I asked whether this was a contribution to historical research!  Of course I'm doing a bit but apparently they having problems locating a politician as they are all off in the South of France etc. So we will see.

And I loved this recent comment from Dame Helen Mirren on social media. She told the New York Daily News.

"Twitter is like a greasy, horrible stinky old man in a corner of a bar. You go up to him and say 'hi' because you want to be polite then he starts being horrible". 

 My sentiments entirely. I have to say (perhaps an age thing) I try tokeep out of all that twitter stuff. My engagement with social media is this blog!

Members at work and cancer.

August is not my favourite month for holiday so I tend to use it for informal meetings with ACEVO members and today I had lunch with Graham Duxbury, the new CEO of Groundwork. Graham took over from the inimitable Sir Tony Hawkhead who now looks after the nation's children at Action for Children. Graham has been with Groundwork for nearly 16 years and it’s good to see charities promoting their talented staff as opposed to searching for some supposed hot shot from the private sector. Groundwork operates in the most disadvantaged parts of the UK, improving people's lives and prospects and work in a green way.

"Changing places, changing lives- one green step at a time"

See their website here - www.groundwork.org.uk/

And Graham was after my thoughts on the search for a new Chair for Groundwork. So if you are interested there is more about the chair role on their website.

Yesterday I was seeing the Chair of the fundraising committee for the Francis Crick Institute, being established by a consortia led by Cancer Research UK; their CEO is Harpal Kumar (who is a much valued ACEVO member). Charles Manby is spearheading the search for funds for an incredibly important new and exciting Institute which will pioneer medical research. One of the founding principles of this new institute will be that it is not just about cancer but looking at the ways disease develops and new ways to treat it. So it is interdisciplinary. Opening in 2015, it will be a neighbour to ACEVO. And run by that great man, Sir Paul Nurse. They have got to about two thirds of their fundraising ask. The will get the rest because this is an Institute that will do vital work. As a cancer survivor I have become hugely interested in research in this area and there are some remarkable developments around the genetic make-up of humans and the markers that indicate things like cancer. So we understand better the causes and can better treat the symptoms. As my consultant said to me when I was at the Churchill, we have to move away from old style industrial surgery based on cutting things out to individually designed treatments that work on the different genetic make-up of us all. A great cause, to be strongly supported.

You can find out more here -  http://www.cancerresearchuk.org/support-us/donate/become-a-major-donor/how-you-can-give/create-the-change

Hospices and health.

 Hospices are a vital and dynamic part of our health system, but run by the third sector. They should be used more and better funded by the NHS. I have always felt that end of life care demonstrates how dis empowering the health service can be. Most people at the end of their life want real choice, where they have that chance, to choose whether to die at home or in the supportive environment of a hospice and yet the majority of people die in a hospital bed.

I have a great membership amongst CEOs of hospices and yesterday spent a fascinating day at the St Joseph's Hospice in Hackney. This is one of the very first hospices in the country, set up over 100 years ago, by Roman Catholic nuns working in a deprived part of London serving many of the Irish Roman Catholic community. Today the hospice is more secular and has a large Muslim population, as you would expect in Hackney, though there are still sisters serving as trustees.  

It's slap bang in the middle of the Hackney community, on Mare St, “the riots stopped just up the road" I was told. I was meeting with Michael Kerin, long time CEO of the Hospice and active ACEVO member. It’s an amazing set of buildings- they pack much into a small plot of land and the gardens are especially peaceful (and have been award winning). Michael told me Prince Edward was a visitor recently to see the gardens as part of the London garden scheme.

And I ought to mention my favourite hospice which is Helen and Douglas House in Oxford, they recently released a fun promotional music video by Out of the Blue which you can watch here: http://youtu.be/bRWVMPnByzo

A great deal of thought and care go into the planning and running of a hospice where the emphasis is on high quality medical care but especially the emotional and loving care people want at their end . I know from personal experience how the final viewing of a departed loved relative can be an experience marred by the surroundings. The hospice mortuary at St Joseph's was a peaceful spot and has much to show the rest of the health service on how to do these difficult things.

And from Hospices to personal budgets; an insightful informal meeting with a number of members and Simon Stevens of NHS England and colleagues. The whole area of choice for us as citizens and as patients in our health and well being service is strictly limited in our interactions with NHS or social care. Personal budgets has been an important development over the last decade but as yet remains an area limited to a small group, whereas there must be more scope for expansion to tackle long term conditions. And continuing the health theme I went off for lunch with Goldman Sachs to talk about cancer research; a subject of both great personal and ACEVO interest.

The Archbishop, Muslims and the War.

The former Archbishop of Canterbury has made an important speech to the Living Islam Festival about the value of Islam. He makes an important and much needed contribution to the current debate on the role of Muslims in our nation. He criticises sections of the press for portraying Muslims as “un-British" and complains of "illiteracy" about religion among figures in Government.

He said Britain was an "argumentative democracy… we are not just individual voters ticking boxes but individuals and communities engaging in open, honest and difficult public discussion."

He went on to say “it's very important that we respect and try to understand diversity of conscience and belief and conviction in our environment. These are not just about what makes us British, they're about what makes us human."

"One of the greatest gifts of the Muslim community in Britain has been that they have brought that back to the people.”

These are welcome comments. It would be good to hear a similar message from the Charity Commission to underline the importance of the Islamic charitable tradition to our society. This would help reassure some large national charities like Muslim Aid who have come to me recently to highlight the pressure they are under.

The Archbishop also makes the wider point about the role of individuals and communities in national democratic debate. It’s worrying that we now have advice from the Electoral Commission on the Lobbying Act which is voluminous (20 separate notes) and confusing. ACEVO members are still unclear on the implications of all this, though our advice is to stick to your mission and not to be deflected from speaking out.

And finally, as today we remember the 100th anniversary of the start of WW1, worth us also remembering the role that charities played, both in supporting communities at home and working with the troops. The work of the great charities like the Royal British Legion continues today. And there will be many families who will remember relatives who lost their lives in that war. For my own we will remember Gunner Vivian Willatts, killed in action on HMS Lion at the Battle of Jutland, at just 20 years of age.