Parkinson’s UK’s online woes show charities are still struggling with social media

Charities are still floundering with social media. A robust debate that broke out last month on the Parkinson’s UK website forums among its feisty and outspoken members proves the point.

Many of them are expressing dissatisfaction about the charity in more than 230 posts on its public-facing website, and it’s clearly causing embarrassment because chief executive Steve Ford has tried to step in. His solution looks like a desperate attempt at damage limitation.

The catalyst for the thread was the charity’s re-brand, which reportedly cost £200,000 and prompted one member to say her granddaughter could have created a better logo, and another that the slanted angle of the new design will make people want to straighten it.

Charity re-brands are always criticised, but it’s Parkinson’s UK’s public response to this discussion that’s really interesting, because basic mistakes have been made. After the first post – a reasoned, articulate criticism of the re-brand by a member called Wobbly – a forum moderator called Tim left a post that trotted out the charity’s position in corporate-bland lingo. It read as if he’d cut and pasted  the press release.

If Tim thought his post would fob Wobbly off, he was sorely mistaken. Post after well-informed post appeared expressing dissatisfaction with his response, and bringing up more and more grievances about the charity’s ‘lack of ambition’ and ‘wasteful expenditure’. To his credit, Ford tried to join in the discussion and answer criticism, but by that time it was too late – it was powering ahead without him.

Now Ford has offered to hold an ‘online meeting’ on 10 March with forum members, which sounds open but actually isn’t. Members wishing to participate must pre-register and the forum will be pre-moderated. His suggestion looks like an attempt to take an embarrassing discussion out of the public arena – another social media mistake – and members are already posting to say ‘count me out’.

The problem with online public forums is that people will use them, particularly if they’re not happy. It’s a mistake to try to fob online critics off with old media-style ‘position statements’, and it’s another mistake to usher inconvenient discussions to a quiet corner, because participants are likely to simply take it elsewhere.

18 Responses to “Parkinson’s UK’s online woes show charities are still struggling with social media”

  1. Kevin Baughen

    This seems to be a real headache for Parkinson’s UK at the moment but I will be very interested to see what tangible impact this episode has in, say, six months.

    Thee is a schools of thought amongst social media research which suggests that due to the sheer volume of new information being produced, most issues are simply replaced with others over a relatively short period of time. I suppose its the modern equivalent of the old adage;

    “Today’s headlines are tomorrow’s chips wrapper.”

    I’m not suggesting Parkinson’s shouldn’t have done this differently but I would like to know the impact of this forum member ‘outrage’ over a period of time on:

    – member numbers
    – donation volumes
    – average donation value
    – overall attrition rates

    The reason is that I’m not sure we have seen any hard facts which equate to the impact on a not-for-profit organisation’s performance as a result of actions like these.

    I for one would be very interested and will include more thoughts in a more in-depth blog later. (

  2. shani lee

    It would be really helpful if there were some clues about how situations like this could be handled differently, or links to other posts that explained how to manage them.

  3. nicola brian

    I’ve been managing the responses on one thread of our forum, and it’s been a very interesting week, to say the least!

    People have reacted really passionately about our new brand and strategy – both positively and negatively – but thankfully most of it has been really positive.

    On the forum, we’ve found that getting the timing of our responses right can be tricky when we’re trying to address a lot of points. But of course we want to engage with people and address their concerns.

    And in response to Kevin Baughen’s question, how will our forum discussion affect us in the future – we’ll have to wait and see. But as I said, the responses are mostly positive so I would hope the long term impact will reflect this.

    Nicola Brian, Director of Comms at the Parkinson’s Disease Society

  4. David Burrows

    It has always been a truism that you can’t please all of the people all of the time. Parkinson’s is far from being the only charity where there are some volunteers or branch members who grumble about head office’s next big idea. What has changed is that online communities and social networks elevate these grumbles to the public domain. I don’t see what charities can do other than promptly and calmly explain the reasons for change – or better still, involve people in the process before the change is made. I don’t know how the £200k was spent but I expect a lot of it went on consultation with people with Parkinson’s about the name and image of the organisation – not simply designing a logo. Parkinson’s could have spent a lot less by not consulting widely – but then you are damned if you do and damned if you don’t!

  5. stephen williams

    I dont agree with any of the comments made by Nicola Brian (comms director for the PDS). I am both someone who has parkinson’s disease and who contributed to the forum debate. If anything the vast numbers of comments dont support the new logo and rebranding. Also concerns are being raised about the culture and management style within the PDS. Its now become hard to follow the forum debate as PDS management have started deleting or editing comments that dont support the rebranding. In some case people with parkinsons disease are being banned from using the forum if they question or challenge management at the PDS. IS THIS THE BEHAVIOUR OF A CHARITY THAT IS SUPPOSED TO SUPPORT PEOPLE WITH PARKINSONS?

  6. Merve Higgs

    This forum debate opened up what was developing into an interesting thread with a wide range of opinions, and the majority view appeared to be questioning whether this £200k was money well spent. Many contributors pointed out that amongst the UK’s 120,000 Parkinson’s sufferers there were many who are or were highly skilled individuals from the charity, financial, business, commerce, retail, project management and advertising sectors. It was mooted that potentially we could have built our own team to address many of the tasks for which we were unnecessarily paying large sums to external consultants. Furthermore, as genuine Parkinson’s sufferers or carers, members of such a team would naturally be more committed to the cause than a commercial assignee, however experienced.
    As a result of the general negativity of the feedback, Steve Ford decided to join the debate, but only contributed what one might call “glossy speak”. When he realised this had had little effect, he suggested (imposed?) the idea of a formal meeting attended by representatives from all parties and points of view. This sounded constructive, so things quietened down while (we thought) Steve went away to organise this all-powerful meeting. Unfortunately, without advising anyone, he changed his mind, and replaced the proposed meeting with a 90-minute presentation on 10th March. Many participants were understandably livid; they had been diverted from their constructive forum debate by promises of consultation and involvement only to find themselves being invited to a short briefing, for which they even had to register! Many voted with their feet, and back on the forum comments became negative and on occasion sarcastic and disheartened.
    Steve’s answer to this, rather than being conciliatory, was to instruct his forum moderator to delete or edit any posting which didn’t support his line. As more and more contributors objected, so the number of deletions and amendments grew, until in frustration the moderator started to completely disable users’ IDs – preventing individuals from being able to post anything at all on the forum. As I write, posts are still being deleted at the rate of 50 or more per day.
    As one of the suspended users, and having emailed both the moderator and Steve Ford with my objections but got no reply, I am extremely angry that not only have I now been excluded from this debate but I can no longer use the forum for its intended purpose, to enable me and other members to communicate with, and support, each other in coping with this awful condition. I am bedridden probably 70% of my life, and this forum is my lifeline; I am often awake at nights, and it allows me to swap notes and sympathy with fellow sufferers all over the world.

  7. Martin Jackson

    This is an interesting issue that has many strands. Most relevant to organisations looking to utilise social media to engage with an audience is the question of online behavior.

    I’ve worked on a number of website rebrands in the past, across a range of sectors, and seen this situation arise many times. I’ve occurrences in which many regular site users react almost ‘violently’ to change and use tools the organistion supplies as part of their assault.

    Allowing users to post anonymously seems to act as a permission to let loose a side of their psyche that they would never normally reveal in an open social setting.

    Recent events on the Richard Dawkins website are a prime example, but local newspaper forums and even the BBC are regularly overrun by vitriolic posts.

    One thing common to all is the feature that allows the creation of usernames, keeping their real identity hidden from other visitors.

    Whilst over on Facebook, where incidents of bullying and abuse do occasionally flair up, users more often act as though they were occupying any other public sphere.

    Organisations that have a presence on Facebook and other social networks find that user’s behavior differs greatly to that displayed on web forums or open comment features because their peers, including family, friends and colleagues, will also see their piosts and comments.

    However, forums often provide a place where people need anonymity to ask questions and enter discussions they may feel uncomfortable discussing in an open environment. The solution to abuses of this may lie in thorough moderation and increasing registration criteria, unfortunately this is likely to turn away from a network.

    Therein lays the dilemma of operating in a web 2.0 world.

  8. stephen williams

    The Parkinson’s disease society forum debate started as a discussion where a number of people expressed concerns over the planned rebranding. The debate then drifted into a wider discussion about the management style and culture within the PDS. Not only has this whole issue been badly managed by the PDS, but they are now deleting postings made by forum members like me, who voice concerns about the rebranding plans. One forum member who has parkinson’s disease was even banned from using the forum for life because he challenged the PDS. On the point of forum identity and moderators? I can confirm my identity is not witheld from the PDS or other forum users. I believe strongly enough in what i am saying, so it would be counter productive to conceal my true identity! If you look at the PDS forum via the link on this site, then you will see the real control and power is held by the PDS moderator and management and not those they are supposed to be helping!

  9. Grahame Darnell

    The thing about social media is that it gives vocal but disparate individuals the opportunity to get organised and speak with a untied voice. Rebrands will always get criticised by a small but vocal minority and social media simply gives them a ready platform to communicate their dissatisfaction and encourage others who feel similarly. Also, it seems to me that the detractors are doing a good job of making this look a bit of a ‘David V Goliath’ thing. This is a good move for them as it brings support from those that may otherwise have remained neutral.

    When I helped rebrand NCH as Action for Children there were some Methodist detractors who felt that the charity was betraying its Methodist roots. By emphasising the simply reasons for the rebrand – especially how the new brand would positively impact fundraising – and utilising all channels to get the message out we could firmly justify our decision.

    My advice to PDS is to keep their conviction. If you can’t win the argument now ask those in opposition to hold further criticism until you have some time to demonstrate the impact of the new brand. Very soon after Action for Children’s rebrand people could see for themselves the positive effect it was having. A year after the new brand was born we launched the charity’s first ever major appeal and at least one Methodist supporter who had vocally opposed the rebrand admitted he was wrong about the rebrand and congratulated us on the work we’d done.

  10. stephen williams

    The rebranding concerns raised by a number of people with parkinson’s via the PDS forum, were not that the PDS plan to rebrand was wrong? The argument put forward was in fact that the rebrand launch and future strategy lacked any real ambition! Simply spending £200k changing a logo and name without any significant changes in policy or campaigning is likely to prove to be a waste of money!

  11. Grahame Darnell

    Not if they are successful at broadening the appeal of the charity. If the rebrand broadens the appeal and the subsequent communication of the new brand (PR, Marketing, Fundraising) uplifts awareness about the cause then they should be able to increase income. None of this requires a change in campaigning or policy. Obviously the income uplift needs to outweigh the costs over a set period…

    Don’t want to fight their corner too much or I’ll have to send them an invoice!

  12. Merve Higgs

    PDS CE Steve Ford gets paid around £140,000, and at least 6 of his executives over £70,000. The PDS also chose to pay consultants £200,000 for the current re-branding.
    After university Ford was fast-tracked into a senior NHS post in Kent before taking over at the PDS 5 years ago. Since then he’s done nothing until now, picking up the re-branding idea from earlier thoughts by his predecessor. And any of his forum members who have dared to disagree with the re-branding expenditure have had their “negative” posts removed, and been banned from the forum for life, as I have. EVEN THOUGH these are chronic and often bed-ridden PD sufferers who depend on the forum as a lifeline to the outside world. Meanwhile the PDS’s payroll bill has increased by ONE-THIRD over the past 12 months. If only contributions had done the same!
    I’m sure this sorry saga will not impress all those folk out there who waste (sorry, donate) their hard-earned spare cash.
    I can assure you that with mis-management, high overheads and financial waste at levels such as these – and such an appalling attitude towards the PD sufferers themselves, and their honestly held views – you won’t find me in the High Street any more jangling my collecting tin.
    If anyone asks I’ll be suggesting they switch their funds to the Michael J Fox organisation.

  13. Donald Pow

    I’ve read loads about social media being big for commercial brand marketing but yet to find someone who says they can show where it’s really worked for them. Maybe it’s the same in the third sector – more hype than substance?

    Donald Pow

  14. Teddy Burns

    Understandably, spending £200,000 on the re-brand for any charity is bound to cause an outlash from the public…

    Check out this link:
    It contains research on how ‘ugly’ or ‘rotated’ typefaces actually improves the brains ability to remember information. Based on these findings, this rebrand may actually have a very positive effect for Parkinson’s UK.

  15. Liam Preston

    I’d like to take this opportunity to thank Lucy Sweetman for raising such an important issue for young people. The British Youth Council has continually raised the issue of high levels of youth unemployment. We want to defend and improve the Education Maintenance Allowance; recognise the value of youth work and protect youth services from spending cuts; say no to tuition fees and yes to graduate tax and the list continues…

    We, at the British Youth Council and UK Youth Parliament, are campaigning hard to get these important issues affecting young people on the top of the government’s agenda through activity such as: three Choose Youth Rallies against youth service cuts – including a rally for one thousand young people in Westminster; giving evidence in Parliament on how youth service cuts are affecting young people; supporting young people to the EMA lobby; taking part in the NUS student demonstration against raising university fees and meeting with the Deputy Prime Minister to discuss the issue. This week, we have pushed hard for government to re-think the work experience element of the Youth Contract – critical for young people gaining the right skills for employment.

    I find it disappointing that we weren’t contacted for comment on this blog. We try to get the microphone to showcase the positive work of young people, but are often ignored by the media. I’m saddened that the amazing work done so far has been overlooked. This blog should be aimed at the media and getting them to listen and promote the work we do not at youth organisations trying to fight to get their voice heard over the crowd.

  16. Lucy Sweetman

    Hi Liam,

    Thanks for your comments. I’ll put my hands up to not being aware of the breadth of your campaigning on these issues and I absolutely support and commend you.

    Perhaps we are arguing for the same thing? I just want to see young people in the media, on camera and on the radio, articulating the impact that the government’s policies are having. I think young people’s voices do get ignored and instead adult/professional representatives talk about the issues on their behalf.

    I certainly think your work behind the scenes to lobby government is excellent and I’m glad you’re getting a hearing. But I’d also really like to see BYC and UKYP at the front end of media coverage when young people’s issues come up. I know that it’s a fight to get in front of the camera and I certainly don’t want to denigrate your efforts, sorry.

    All the best,



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