With free support from Beacon’s Information & Advice service, Margaret fought against the unlawful practice of families having to pay top-ups for care – and received over £35,000.

In January 2012 Margaret’s (not her real name) mother, who had Parkinson’s disease, fractured her hip and was admitted to hospital. In hospital she was assessed as eligible for NHS Continuing Healthcare (CHC) funding, and was discharged to a nursing home.

Margaret was told that the Clinical Commissioning Group (now ICB) that paid her mother’s CHC would not meet the full cost of the nursing home fees. The patient/family was told to ‘top up’ the payment for accommodation, at a cost of £75 per week.

This ‘top up’ is unlawful according to the National Framework for NHS Continuing Healthcare.

Margaret had concerns about the care at this nursing home, and moved her mother to another that was more suitable. She also contacted the CCG to query the ‘top up’ payments. They insisted that their funding level for CHC would be no more than £675 per week and that she must pay.

In the new nursing home, these weekly top up payments began at £240 per week, and rose with increases to the nursing home fees.

In autumn 2012, still unsure that the payments were appropriate, Margaret emailed the Department of Health. They confirmed that top ups could not be made for ‘core services’ of care and accommodation (as opposed to ‘additional services’ such as hairdressing or chiropody).

Despite this, the CCG – and later the Parliamentary and Health Service Ombudsman – failed to acknowledge that these top ups were wrong, or investigate Margaret’s complaint.

Margaret’s mother sadly died in January 2015, by which time she had paid £34,449.32 in top ups.

In May 2015, Margaret contacted Beacon for advice. She was exhausted by the protracted dealings she’d already had with the CCG, nursing home and ombudsman, but we strongly advised her to persist.

With our guidance, Margaret wrote first to the Chief Executive of the CCG and Parliamentary and Health Service Ombudsman to no avail. Next we advised her to directly email the head of the Ombudsman’s Complaints Department explaining that their previous decision not to investigate was incorrect based on PG99 of the National Framework Guidance and that, having sought Beacon’s advice, she now had more information which justified her request to the Ombudsman to reconsider her complaint. We also advised her to write to her local MP and the Chair of the Public Administration Select Committee within Parliament, who scrutinise the Ombudsman.

As a direct result of Beacon’s advice, the Ombudsman carried out a detailed investigation, and upheld Margaret’s complaint in her favour.

The Ombudsman stated:

“Patients should never be charged for NHS care…funding by CCG’s of CHC packages should be sufficient to meet the needs identified in the care plan.”

After considering the Ombudsman’s findings and taking legal advice, the CCG agreed to reimburse Margaret with the full amount of £34,339.32. In addition, the Ombudsman admitted that they failed in their duty to investigate Margaret’s case previously and offered to compensate her £1,000.

All our advice and support for Margaret was free, through our Information and Advice Service.

Margaret said:

“It has been a long struggle, taking several years and a good deal of my time and energy to get to this point. I am very grateful for the support and help you gave me which I am sure has been instrumental in achieving this outcome.”

Dan Harbour, Managing Director of Beacon CHC, said:

“Every day our advisers on our free information and advice service help people like Margaret to exercise their rights – by supporting them to gather the best evidence and get it to the key decision-makers. In Margaret’s case, I’m really proud that we were also able to support her to find the strength to keep fighting a battle that her and her mother should never have been burdened with.”

Date of original upload: 4 July 2016

NB: All calls to us are confidential, and we’ve changed the names of these clients to protect their anonymity.