14 May 2025 News
The MND Association has launched a new project to help support people living with MND access specialist advice about available funding.
The pilot project aims to help individuals navigate the process of applying for continuing health care (CHC) funding.
People calling our MND Connect Helpline with queries about CHC funding will be offered a direct referral to Beacon, an independent specialist service.
Beacon experts will then provide 90 minutes of free, personalised advocacy support. This could include advice, support with applications or following up with CHC funders about individual cases.
CHC is a package of care for adults aged 18 or over and funded by the NHS but requires assessment by integrated care boards (ICBs) in England before it can be accessed.
This process can be complicated, confusing and intimidating. To qualify for CHC, the person must be assessed as having a ‘primary health need’.
This usually means they have nursing or healthcare requirements which cannot be met by adult social care services.
Examples of this can include:
- Complex needs which require a high level of skill to manage
- A need for ongoing care
- A condition which is changing quickly and causing concerns in managing care
The pilot, which is set to run for an initial six-month period and began on 1 April, will be evaluated regularly.
The MND Association is the only charity that partners with Beacon in this way, with this direct referral an exclusive service.
Hayley Koumas, Project Manager for Service Improvement and Transformation, said: “In the current climate, many people with MND may be wrongly paying for their healthcare and facing a worrying financial future.
“We were hearing that access to expert advice and advocacy was a key problem and one we wanted to address.
“The pilot was developed as direct result of the coproduction work we have done, and it will support people to help navigate the complex CHC process.
“If a person qualifies, it can make a big difference to their care and quality of life – CHC is something we want everyone in our community who meets the criteria to have access to.”
To access this service, and for support and information contact the MND Connect Helpline 0808 802 6262, or email [email protected]