FAILING TO CARE

Did you know the NHS in England is forcing sick and vulnerable people to pay for care that should be free? Be part of our campaign calling for urgent improvements to the NHS continuing care system.

Many people with Parkinson's are being left to pick up the costs of care that the Government says should be free. This simply can't continue.

Failing to Care, our investigation into NHS continuing care, reveals not just huge failings with the system, but simple ways to repair it.

What is NHS continuing care?

NHS continuing care is a free care package delivered outside of hospital for people with conditions that are complex and advanced. This care can cover nursing and personal care needs, and cover accommodation costs for those who live in a care home or hospice.

Continuing care is arranged and funded by the NHS and is not means-tested.

For thousands of people in the advanced stages of Parkinson's, NHS continuing care is a necessity. But they simply aren't getting access to the free care they need.

Campaign progress

Since launching the campaign in November 2013 we've met with the Care and Support Minister Norman Lamb MP and NHS England officials on 2 occasions.

We have discussed the recommendations of the NHS continuing care inquiry and how they can be implemented.

Mr Lamb recognises the problems with the broken system and has tasked NHS England and the Department of Health with improving NHS continuing care. Progress is being made by the Government and NHS.

Others areas of progress as of November 2014:

• We've been working closely with NHS England, the Department of Health, the Parliamentary and Health Service Ombudsman and Healthwatch England to find ways in which they can improve the system.
• We've joined with a number of other charities to create the Failing to Care Coalition so we can work together on achieving the aims of the campaign. These include: Alzheimer's Society, MS Society, MND Association and several others.
• Our campaigners sent the Minister over 1,000 emails calling on him to end the constant reassessment of people with progressive conditions.
• Our campaigning has made NHS England produce an Assurance Framework aimed at improving the performance of Clinical Commissioning Groups across England.
• We successfully campaigned for Care Act guidance to require local authorities to consider providing an independent advocate to anyone applying for NHS continuing care.

Alongside other charities we will continue campaigning into and beyond 2015 to make sure the Government and NHS act on all of our recommendations.

News stories on Failing to Care

• Personal health budgets for people with NHS continuing care (3 October 2014)
• Help us end NHS failure to care (29 April 2014)
• NHS Failing to Care for people with Parkinson's (27 November 2013)

What we're calling for

We want NHS England to be accountable for NHS continuing care.

To end the chaos, by the end of 2014 NHS England must:

• collect condition-specific data to find out exactly who applies for NHS continuing care, who receives it, and the outcome of appeals
• develop clear processes, guidance and timelines for decision making, ensuring that Clinical Commissioning Groups (CCGs) are accountable
• implement an assessment that reflects the needs of people with complex and fluctuating conditions, involving healthcare professionals with expertise in that condition
• create a truly independent review process for complaints or appeals, with costs repaid in full for overturned decisions
• establish an agreement that applicants with a progressive condition, or one that will never change, should not be continually reassessed
• give people the right to experienced, independent support when applying for continuing care

For more information about what we're calling for:

• Failing to Care: NHS continuing care in England - full report (PDF, 164KB)
• Executive summary (PDF, 31KB)
• Campaign briefing (PDF, 79KB)

More about our Failing to Care campaign

Please read our questions and answers below. Or contact Leo Watson, Policy and Campaigns Adviser, on 020 7963 9322 or email lwatson@parkinsons.org.uk

- See more at: www.parkinsons.org.uk/content/failing-care-campaign