681 frustrating days that we hope will improve the system.

Posted on: June 9th, 2017 by Amy

When Allan* tried to appeal for retrospective care funding for his mother, he came up against a communication ‘brick wall’. Over two years, our expert caseworker worked with Allan to try and resolve the issues, culminating in a formal complaint to the Clinical Commissioning Group (CCG), which was upheld.

Allan’s mother had been assessed as not eligible for NHS Continuing Healthcare (CHC) funding for two years between 2010 and 2012, before being assessed as eligible in March 2012. Allan had done his research and felt that the decision in 2010 had been wrong, so he employed Beacon to begin a retrospective appeal for funding on his mother’s behalf.

Well prepared

Working with Allan, we gathered detailed evidence from that period and conducted a review of the assessment. We concluded that there was sound basis for an appeal, and Allan instructed us to proceed. In April 2015 Allan and his Beacon caseworker had a meeting with his mother’s CCG. They talked through the evidence and agreed next steps with the CCG. Both Allan and the CCG wished to resolve the matter locally, without the need for an Independent Review Panel.

However, the follow-up letter from the CCG to Allan barely mentioned these steps and consisted almost entirely of copy/paste information such as the contact details for NHS England.

Allan discussed the letter with his caseworker, who responded on his behalf, asking for an appropriately detailed account of the issues – along with a clear rationale for the decisions reached.

A communication vacuum

Nearly two months passed with no reply. We chased it up and received a short email from the meeting chair saying they were satisfied they had responded appropriately and that, if we wished, we could escalate the matter with NHS England.

So, with Allan’s permission, we did. NHS England responded to say they were raising it with the CCG. Five months later – in April 2016 – they confirmed that the CCG would take further steps to resolve things, with the first step being the formation of a Local Appeal Panel to review the retrospective eligibility decision.

Seven months passed with no Panel convened. On Allan’s behalf his Beacon caseworker made multiple and regular attempts to contact and get any response from the key person at the CCG.

During this time Allan’s mother sadly died.

A last resort

On 6 December 2016, we submitted a formal complaint to the CCG, on behalf of Allan, on the grounds of:

  • The sheer amount of time the process had taken. Guidance states that the local review process should take three months. Allan had been in the process for 22 months, with no end in sight.
  • The complete lack of cooperation and willingness from the CCG to work with Allan to reach a genuine resolution.
  • The lack of professionalism shown in the CCGs approach, with a paucity of information provided and a discourteous and, at times, adversarial attitude.

The resolution

The CCG responded to the complaint in January 2017, following an internal investigation. They apologised for the way in which they had dealt with Allan and his mother’s case, admitting that “…the team did not always act in a professional, timely or competent manner…”.

They confirmed they had reviewed their processes and put in place actions that should prevent people having such a poor experience in the future.

Dan Harbour, Director of Beacon, said: “Allan’s experience with his mother’s CCG was among the worst we’ve seen. They failed to provide even the most basic level of service, which is totally unacceptable, particularly when dealing with the sensitive and emotional issues of a loved one’s care needs.

“The CCG’s apology doesn’t compensate for the time and stress this two-year trudge required of Allan. But we hope that his persistence and our expert help has led to significant improvements at the CCG – so that others have a much better experience during an already stressful time in their lives.”

Six hundred and eighty-one days after initiating his appeal, in December 2016 the long-awaited Local Appeal Panel took place. The panel overturned the previous decision – concluding that Allan’s mother had indeed been eligible for CHC funding between 2010 and 2012. The estimated restitution for his mother’s care is £66,000.

Allan said: “My Mum would be very happy to know her years spent saving and being sensible were not in vain, and her dignity is a little more intact now. Thank you for the expertise and dedication you demonstrated which was consistently delivered in a caring and collaborative manner.”

Do you need our help?

If you are preparing to appeal a continuing healthcare decision for yourself or a loved one, and need some help, call our free Information and Advice Line for support from independent experts.


*not the client’s real name

Sign up to our newsletter