Campaigning to improve the quality of NHS continuing healthcare

The Health and Care Bill currently in the House of Lords proposes a major shake-up of how health and care services are organised in England, by introducing integrated care systems (ICSs). Find out more about integrated care systems on the NHS England website.

The Continuing Healthcare Alliance, a group of 20 charities campaigning to improve NHS continuing healthcare (CHC) which Parkinson’s UK coordinates, has been focusing on ensuring these bodies are set up properly to meet our community's needs. We have been calling for:

• ICSs to report on the quality of services they deliver to both NHS England, the national body who are responsible for the quality of NHS services, and also the care regulator, the Care Quality Commission (CQC)
• NHS England to have the right powers to take action if an ICS fails to do its job properly. 

This joint work has focused on improving the quality of CHC from assessment to delivery across England.

CHC is a package of care arranged and funded by the NHS in England and people may be eligible if they have substantial and ongoing care needs related to their health. However, having a specific health condition like Parkinson's or a spinal injury does not automatically guarantee you CHC.

House of Commons stages

Last year, the then Shadow Health Minister Justin Madders MP, raised our concerns in the House of Commons.

At committee stage, the government sympathised with our concern about ICSs, reporting on the quality of the services they provide, and proposed the CQC should have a duty to inspect ICSs.

This amendment was agreed and we are pleased that there will be this additional independent assurance.

House of Lords stages

In the House of Lords, Lady Finlay and Lady Greengross proposed several amendments to the bill. You can see the proposed amendments to the Health and Care Bill on the UK Parliament website (from 11.15am).

The minister responded that he didn't think the amendments were needed, as NHS England already has the necessary powers to take action against an ICS.

He also added that he felt the government had already introduced an independent assessment of how an ICS performs into the bill.

Positive progress

We're really pleased these important issues were debated, signalling that the way in which a person applies for CHC, and the way in which it is delivered, might become easier.

This improvement would be a huge step forward for those who already face complex health challenges. 

We’ll continue to monitor the bill as it progresses and also work with the Department of Health and Social Care to ensure ICSs have clear guidance on delivering CHC packages that meet the needs of people applying for it.   

Laura Cockram, coordinator of the Continuing Healthcare Alliance, said: 

"Alliance members have heard numerous and terrible stories about people not being able to easily access CHC, which can be hugely distressing.

"It's crucial that the new local health bodies know their performance of all of the services they provide will be scrutinised. For too long our supporters have faced numerous issues with CHC, including poor quality decisions and a postcode lottery when it comes to accessing support. This cannot continue.

"We want to see annual reports on how each ICS is performing on CHC and that NHS England has the right powers to take action if an ICS isn't delivering what it should.

"Having the support of MPs and peers has been invaluable in fighting our corner for better support for our communities."