What ever happened to the Mali Jenkins Trust Fund?

Hi All

Mali Jenkins started this PD organisation and she'd be turning in her grave if she knew that the present trustees of her legacy had stopped assisting those people that this very charity was designed for!

Where oh where has the money gone?

Disillusioned PwP!!!eek


Hi Pokermid,

Thank you for your message which is quite timely. We are currently developing a new scheme to offer financial assistance to offer a broad range of support to people living with the condition. We will be piloting this in early 2016 before rolling out across the UK.

Our local group network continues to offer financial assistance to those in need. The 2015 figures are still being collated but in 2014 this amounted to over £330,000.

Our vision for the future is to continue the legacy set up in Mali Jenkins’ name by offering fair and equitable financial assistance to those who she set up the charity to support.

If you'd like anymore information please feel free to contact Stacey at [email protected].

Best wishes,


(Digital team) 



Please would you outline the current MJ award scheme ie:

what help it gives

who qualifies

and how the new scheme will differ



Hi Leyther,

Thanks for your message. For a breakdown of how financial assistance works currently and for details about how the new scheme will work, please contact Stacey at [email protected]

Best wishes,


This is becoming a joke. First of all Parkinson’s uk close the Mali Jenkins fund in 2014 with a promise to design, trail and rollout a new scheme in 2016. Here we are in 2018 and they haven’t done anything. Apart from taking the old scheme and giving it a new name but only making it available in a very limited number of locations during 2017. I’m now informed the earliest date for new help fund to be fully launched is sometime in 2019 ?

Shame on you Parkinson’s uk for turning your back on the most vulnerable and needy. I for one would like to know what you have done with the £300K per year since 2014 because it ammouts to £1.5m over 5 years

Hi @blueeyes47,

We appreciate you raising your concerns about the Mali Jenkins Trust Fund. We have raised this with our internal team and will get back to you on this as soon as we can.

Best wishes,

How nice to hear you are still around Blue-eyes!
How are you?
Well I hope…

Add my name to the list of people who want to know how this Money was used or why it was not used.

GG you are a legend a warrior and a woman of courage. But most of all your the flag bearer to truth, compassion and justice for the thousands of people who’s lives were destroyed by something 100 times more dangerous than any drug and that thing is “reputations” Be they a pharmaceutical company or health professional or even a charity . Protecting individual or organisations reputation from my bitter experience is way ahead of compassion help truth or justice
Anyway bluey is back, maybe more blurry than bluey and 47 is now 59😩 which is Parkinson’s years is 17 years living with Parkinson’s. My diagnoses was in 2001 and I joined this forum 2006/07

GG I will post a significant update on the “who kidnapped the Mali Jenkins fund” tomorrow morning as I’ve just secured a urgent meeting with Steve Ford on the subject


1 Like

Now there’s an unholy alliance if ever I heard of one!
Just kidding bluey:sunglasses:

1 Like

Thank you Blueeyes…I fought for years but lost to the greed of Big Oharma…unsupported by PDUK sadly.
It is good to hear you are surviving.
My husband has been in hospital for the last 3 months and life is pretty grim.
Wonder what happened to our comrades…Ray of Sunshine? Glennchas? … and many others who were victims of the DA scandal…

I have a meeting booked next Thursday with Steve Ford to try and resolve this issue and get the Mali Jenkins help fund back and available for all to access not just a few.

Will update you after the meeting


1 Like

Sorry to hear that GG; same position here , OH has been 101 days in hospital; hence my lack of posts. They are home now BUT it’s 24/7 care and I am exhausted.

Oh Benji,
I am so sorry.
The daily visiting, the battle to get physio, to stop him being written ipoff…it is exhausting.
I am at the point of applying for Continuous Health Care…either to,pay for his care at home or in a care home. Not means tested.
Another battle.
I have lots of information and guidance if you want any sending.
Very hard to get but worth applying.
Be strong and take care.

This is an update following my discussion with PUK last week.

Parkinson’s Uk seem unmovable in terms of continuing with a year long trail of the new Take Control Help Fun. This being the help fund that’s supposed to be replacing mali jenkins. When you compare the criteria of the old Mali Jenkins help fund to the new Take Control help fund, there’s very little difference between them. So i for one seriously question why are they introducing a new help fund, that is broadly the same as the old one?

Communication of the purpose of having such a lengthy trial has been confusingly poor as has the rationale for having no help fund for yet another year. Along with unresolved concern over running a trial with only limited coverage of the whole UK. All of which is a source of mystery and confusion, not only to me but also among the several people I’ve spoken with at Parkinson’s UK following my discussion with senior management.

Looking back at mali jenkins fund historical data, it would suggest a serious mis-match in terms of the need for a new scheme, let alone one with a year long trail that nobody really understands. This being compared with getting on with operating a national help fund that’s supporting some of the most vulnerable and indeed the poorest of people living with Parkinson’s disease.

Its now been nearly 3 years since the Mali Jenkins fund was withdrawn (July 2015) and will be at least another year before any national rollout of the new take control scheme. This is totally unacceptable and in my considered opinion, Parkinson’s UK have knowingly and deliberately been refusing to help those in most need since 2015.

For example previous mali jenkins grants data shows the following four areas accounted for almost two thirds of all means tested approved applications; North West England and North East of England, Scotland and the East Midlands.

By comparison the four areas with the lowest level of approved grant applications were; Southern England, the South East and London, Northern Ireland and East Anglia.
If you compare this data to the trail areas selected, none of the historical areas with the highest number of approved applications from people most in need of help are included in the current trial. Furthermore three out of four of the areas listed above with historically the lowest number of applications are included in the current trial. This is plain crazy or could it be a deliberate attempt to dum down the future money alloted to the new Take Control help fund?

Since July 2015 (date mali jenkins fund withdrawn), i estimate around 350 people living with Parkinson’s and who are classified by the UK government as; “Living in absloute and persistent poverty” are being denied access to help by the charity who’s since 2015 have been refusing to help them. Not to mention errasing its founders name (mali jenkins) along with her mission purpose for establishing this charity in 1969 almost 50 years ago.

So once again I ask parkinson’s uk to scrap the trail and immediately make available a means tested help fund and stop playing with the lives of vulnerable people.


Hi Blue-eyes,
First of all…why do Ihave to scroll through 2 years of old posts to get to the new one?
I agree that the running of the trust is dreadful…particularly removing her name.
Sometimes I despair of PDUK.
No support for the fight against DA horrors, a forum that gets harder to use, no update on promising research e.g. prosavin.
I am sure they help a lot of people but at the moment I am feeling let down.
Keep fighting!

Me too.

Hi all,

We’d like to update everyone on what we have been doing since the last Mali Jenkins grant was awarded in June 2015.

In 2016, we ran a pilot scheme in Surrey, financed by a generous local legacy. We used this to test how local knowledge could help us reach those in most need and trial new ways to respond quickly to applications. Throughout 2017 we continued to award grants in the pilot area and if our Local Advisers found cases of particular need in other areas we were also able to offer help.

We’ve chosen four areas to start rolling out the new grants and together these areas provide a mix of urban and rural challenge, pockets of significant economic deprivation and areas of high ethnic diversity. They account in total for approximately 23% of the total number of people with Parkinson’s across the UK. We’re testing new processes and procedures out in these areas, and plan to move to full UK wide access in 2019. We’re sorry it’s taken so long to get the new process up and running but hope that the new scheme will ultimately help us to reach more people, and those who are in the greatest need.

We’ve made changes to improve the way we offer grants. Our updated materials now comply with recommendations from the Disability Rights Consortium and application packs can be downloaded so that more people can choose to access information from our website. We’re recruiting and training more grants panel members and holding more frequent panel reviews so applications move quickly to award.
We’ve introduced an ‘activities’ grant to bring exercise and therapeutic activity to people coping with financial need. We’ve put greater emphasis on what an applicant tells us about the impact the grant will have on their quality of life and every applicant is now offered support to ensure that they are accessing their full benefits entitlement.

We’d also like to remind people that our information and support services work directly with families living with Parkinson’s. People living everywhere in the UK can access our Helpline, our Local Adviser service. Our Local Advisers are based all around the country, and are well placed to support people in helping them to access local financial support. We’ve invested in a specialist benefits and employment service in response to feedback from people living with Parkinson’s. Cases are escalated to the service and Tim Moore, the service manager says:-

“The team can spend many months working with a client and their family, often through a reconsideration or appeal when they are turned down for a sickness or disability benefit. This gives the client representation to help them to navigate through a really complicated legal process and make their case.

Nationally, the number of benefit appeals has risen significantly in recent years, so this support is more important than ever. The team’s current success rate in changing benefit decisions is over 90%, compared to the national average of around 60%.
I’d like to share a couple of examples of the team’s successes:-

  • A client in his 50s, had to stop work for health and safety reasons due to Parkinson’s. He claimed sickness benefit (ESA) but was assessed and found fit to work. The DWP gave him 0 points for all activities. We supported him through the appeal process, where he was awarded the highest rate of sickness benefit and his local adviser also helped him claim a Blue Badge and disability benefit (PIP) which he has received at the highest rate for both daily living and mobility. He is now £12,934/year better off.

  • A client has been paid over £13,000 in backdated premiums on Pension Credit due to a benefit check and subsequent advice. “

While all this has been going on our amazing local groups have continued to offer grants in their communities totalling between £250,000 and £300,000 each year - so with their help we’ve continued to support those who need financial help.

You can read more about Take Control Grants at http://www.parkinsons.org.uk/about-us/parkinsons-uk-take-control-grants where you’ll also find information about other sources of financial help, and more detail about how to access our information and support services. And if you’d like to discuss any of this in more detail, please contact our Director of Support and Local Networks, Katherine Crawford on 0344 225 3720 or at [email protected]

Many thanks,
Parkinson’s UK Moderation Team