Stepping Down To Step up
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Amanda Fearn and I completed the business plan for The Silent Bleed (TSB) in 2013, and I am proud that we achieved everything we set out to do in raising awareness of Superficial Siderosis (SS).

A cure is still urgently needed. Although recent seminars have helped educate neurologists, many remain unaware of SS, and some appear unwilling to engage. We continue to receive messages from patients whose neurologists either do not recognise the condition or fail to respond to enquiries. This ongoing gap in medical awareness remains a significant barrier, and further support from organisations such as the Superficial Siderosis Research Association (SSRA) would be invaluable.

Whilst an SSRA seminar in the United States last year successfully reached many neurologists and individuals, feedback suggests many patients still struggle to find specialists familiar with SS. While medical professionals do their best within limited resources, the TSB fills an essential role: providing community, information, advocacy, and peer support that patients consistently describe as “life‑changing.”

At the UCLH Stroke Research Centre on 8 April 2018, I committed to raising awareness of SS while leaving treatment development to medical professionals. Since then, we have contributed to experimental treatment awareness, shared global resources, created informational leaflets, and supported patients in accessing knowledgeable specialists, including referrals to Dr. Levy.

I have personally invested  over £7,000 in running the TSB account to strengthen our work, and with the help of our community, including online events, we successfully support people worldwide. We are desperately seeking more funding, the SSRA received $10,000, I ask how valuable is the pre and after care of individuals, how important is it that they have they have thier say as well as express themselves to others that can relate? We create a sense of community and desperately seek funds to keep that going.

When Things Went Wrong — The Barclays Account Issue

In 2013, Barclays advised us to open a Community Account, stating it would function like a Charity Account. I proceeded in good faith, believing this was appropriate.

In 2024, following a death in the family, I requested that Barclays add a bookkeeper to help manage the financial workload as I was now experiencing neurological overload. Only then did Barclays acknowledge that they had given us the wrong account type for over a decade and admitted this was an error.

This mistake had significant consequences. Managing the account during a period of acute neurological strain severely worsened my SS symptoms. According to my neurological psychologist, this contributed to a marked decline in cognitive function, alongside increased ataxia, migraines, visual impairment, and chronic exhaustion. The situation also strained family relationships at a particularly vulnerable time.
 

This resulted in a freeze on the account, charity operations were severely restricted and there was a financial compliance failure risk. For such a small charity, these implications were massive and caused significant stress and disruption to the running of the charity. 

 

In addition to this, the person who had set up this charity with me; Amanda, resigned due to the stress caused by this and I was left without one of the key people who had been supporting me to run this charity whilst dealing with my health issues, purely due to this error made by the bank.

Because of these challenges and to help me run the charity, I have had to employ a VA, Deborah Ebiniyi. Even during a personal tragedy, Debbie has provided continuity for the TSB. She independently manages newsletters, interviews, community engagement, and online events. Her dedication highlighted how significantly my own cognitive abilities had deteriorated.

Due to the ongoing health impact, I will be stepping back from management of the TSB from 1 January 2026, with Debbie taking over many of my tasks. I will remain involved in the background where possible.

Summary of the Impact (“Ripples”) of Barclays’ Error

Barclays acknowledged they provided the wrong account type. The resulting impact expedited the following conditions:
- Severe neurological overload
- Worsened ataxia and impaired mobility
- Increased cognitive decline and neurological disorders
- Chronic migraines and visual impairment
- Emotional and psychological stress
- Significant family strain during bereavement
- Loss of independence; I easily fall
- Permanent reliance on mobility aids
- My family had to move
- Inability to continue leading the charity

These consequences are profound and life‑altering. I am currently preparing to present supporting evidence to a solicitor.

Compensation

Typical Financial Ombudsman compensation for distress ranges from £1,500 to £5,000, which is wholly inadequate given the severity of the damage caused. This amount would not cover the cost of essential mobility equipment, let alone the irreversible deterioration of my health.

Given the long‑term impact on my mobility, cognition, independence, family life, and ability to run the TSB, I am willing to settle out of court for a reasonable amount that would allow me compensate those that were under pressure as well as those that stepped up to help me. If this is not considered seriously, TSB is combining legal action and making the situation public, including the implications for disabled customers and charities relying on accurate account setup. I hope this kind of exposure increases disability awareness in the public sector as well as private, the last Business I ever expected to Bring Harm to TSB was is a bank, who can you trust?

Disability Awareness

Barclays’ handling of this issue highlights substantial gaps in disability awareness and training. I have requested clarification regarding:
- The nature and duration of disability training staff receive
- Who provides this training
- How Barclays ensures vulnerable customers are appropriately supported
If Barclays wishes to improve its training standards, I have told them I am willing to contribute my experience.

In closing, I remain committed to improving my cognitive health and will be contributing further to the TSB -  however with less stress. However, resolving this matter with Barclays is essential, a large part of this money Will be going towards TSB. Mistakes that cause harm must be taken seriously, fully acknowledged, and fairly compensated. Mistakes that cause major disruption in a Health charity for the public are very big mistakes and I will make sure they are rectified.

Yours sincerely,

Jason Roberts