New guidance published on previously unassessed periods of care for continuing healthcare

The Continuing Healthcare Alliance (CHA) urges families to know their rights as new guidance published could see "no win, no fee" companies cash in on backdated care claims.

The CHA is a group of organisations and charities campaigning to improve NHS continuing healthcare (CHC). It has called for people to familiarise themselves with their rights as the Department of Health and Social Care (DHSC) issues new guidelines.

The CHA is made up of organisations including Parkinson’s UK, Age UK, the Spinal Injuries Association, Dementia UK, the Alzheimer’s Society and Marie Curie. It has input to the revised DHSC guidelines on Previously Unassessed Periods of Care (PUPoC).

Some people with long-term complex health needs qualify for free care arranged and funded solely by the NHS. This is known as NHS continuing healthcare or CHC. It can be provided in a variety of settings outside hospital, including a home or care home.

Find more information on CHC on the NHS England website.

Updated guidelines

These new PUPoC guidelines enable Integrated Care Boards (ICBs) to consider eligibility for a past period of CHC, even for those who did not apply, but think they are entitled to funding.

The updated guidelines include:

  • the transfer of responsibility from the applicant to the ICB to gather the relevant care records and documentation.
  • responsibility for making a direct referral if they are not the correct commissioning body.
  • the introduction of a 12-month timescale to make sure all cases are completed in a timely fashion.

"No win no fee" concerns

The CHA is warning people to think carefully before applying for the funding, and to seek advice from one of the organisations in the Alliance, before they make any applications.

After 2012, the NHS received nearly 60,000 new retrospective claims. 51,000 applications (85%) were deemed ineligible, and fewer than 600 applications (10%) were approved as being eligible for funding.

A flurry of "no win, no fee" claims firms cashed in on vulnerable families. These firms were ill-informed of the assessment process, mismanaged expectations and encouraged applications regardless of spiralling legal costs, even though they knew only a small percentage would be successful.

In some cases, the assessments took up to 10 years to complete. Locking families into "no win, no fee" contracts and making people unable to end their claim without paying a fee, and also being powerless to recover their care records.

The CHA therefore recommends caution before starting the application process.

Laura Cockram, Head of Campaigns at Parkinson’s UK and co-ordinator of the CHA, said:

"Most CHC applications are made at an already difficult and emotional time. It can be a long, taxing process. As an Alliance, we recommend applicants familiarise themselves with their rights both when they start the application, and seek qualified support, where possible."

To help combat the issue, the CHA works with the Parliamentary and Health Service Ombudsman and has campaigned for improvements to the system. They also recently inputted to the update of the latest guideline.

Dan Harbour, Managing Director of social enterprise Beacon CHC, said:

"We absolutely encourage people to apply for retrospective CHC funding where they believe they have a legitimate case.

"However, it is crucial that individuals are aware of and understand their rights. Due to the highly specialised nature of CHC, if you feel that you need advocacy or representation it is vital that you find an organisation with the right expertise in the field to support you.

"Bear in mind that no firm, regardless of credentials or experience, can guarantee a favourable outcome to an application. Free information and resources are available to support those who don’t require representation."

Information and support

For further information, in-depth guidance and free resources on NHS funding for PUPoC, visit Beacon's website.