NHS continuing healthcare

NHS continuing healthcare can be provided by the NHS in any setting, including a care home, hospice, hospital or your home. NHS continuing healthcare covers both health and social care needs. If NHS continuing healthcare is provided in a care home, it will cover the care home fees, including the cost of accommodation, and personal and other care. If NHS continuing care is provided at home, it will cover the costs of personal and other care.

Healthcare at home can include things like care from a specialist therapist or a community nurse, and personal care can include things like help with washing and getting dressed. It can also include help with wider needs such as shopping and using other services in the community.

In both a care home and your own home the PCT will use the assessment to help decide what care needs they should meet.

If you receive NHS continuing healthcare at home, local social services may still have responsibilities to provide some services for you although the PCT will be responsible for meeting your key care needs. Where local social services provide some care services, they will usually do a financial assessment to decide whether you must make any financial contribution for these. The NHS does not charge for any NHS continuing healthcare services. 

A checklist is used to decide whether someone needs a full assessment. If the checklist suggests that you may have needs that would make you entitled to NHS continuing healthcare, you should have a comprehensive assessment by a range of the health and social care professionals involved in your care (called a multidisciplinary team). This could include doctors, nurses, therapists and social workers. The PCT should clearly identify a professional who will co-ordinate the process.

The team will use the information from the assessment to complete a document called the decision support tool. This helps the team look at your care needs in a number of different areas. These are:

• behaviour
• cognition (understanding)
• communication
• psychological/emotional needs
• mobility
• nutrition (food and drink)
• continence
• skin (including wounds and ulcers)
• breathing
• drug therapies and medication including symptom control
• altered states of consciousness

For each of these issues a conclusion is reached about the level of need. The levels are 'priority', 'severe', 'high', 'moderate' or 'low'.  

If you have priority needs in at least one area or severe needs in at least two, then NHS continuing healthcare should be provided. Someone may also qualify for continuing healthcare if they have a severe need in one area plus a number of other needs, or a number of high or moderate needs.

The team will consider how complex your needs are or how intense or unpredictable these needs can be, including how the needs interact together and any risks or needs that would exist if adequate care was not provided. The team will then make a recommendation to your PCT about whether you should be entitled to NHS continuing healthcare.

You will be offered the opportunity to be fully involved in the assessment and the decision support tool. This will include being offered support from advocacy services if you need their help to take part. If you wish, family members and other carers are also able to take part and give their views.

Your PCT will give you a written decision on whether you are entitled to NHS continuing healthcare including who to contact if you are dissatisfied with the decision

You may need to know how to take further action if you are not satisfied with the way the continuing healthcare assessment was carried out, or if the outcome was to refuse NHS continuing healthcare.

The first stage is to ask your local PCT to review their decision. The PCT will have a local review process and will send you details of it on request.

If you are still dissatisfied after the local review process has been completed, you can ask your regional strategic health authority to set up an independent review panel to consider the case and make recommendations to your local primary care trust. Find your strategic health authority.

The panel will consider whether the PCT has correctly applied the guidance in the national framework when making their decision. You should be offered the support of an advocate (someone to speak for you) if you need one, to help you through the process.

While the review process is under way, the decision that has been made about responsibility for funding your care continues in place. However, if NHS continuing healthcare is awarded as the result of an independent review, the PCT will consider making a refund to whoever has funded the care in the meantime. This could mean you or social services will get a refund, depending on who has been funding the care.

There may be situations where you have been awarded NHS continuing healthcare but you are dissatisfied with other issues. For example, you may not be satisfied with the type or location of NHS care offered. In these situations you can use the normal NHS complaints procedure. This involves making your complaint to the PCT NHS professionals involved in making the decision to see if it can be resolved. This is known as 'local resolution'. You can ask to be put in touch with your local Patient Advice and Liaison Service (PALS). They can tell you about the Independent Complaints and Advocacy Service (ICAS), which could give you support when making the complaint.

Always try to resolve your complaint locally first, as this is likely to be the quickest way.

If you are still dissatisfied after a complaint is not resolved at the local resolution stage or by an independent review panel, you could refer the case to the Health Service Ombudsman.

You may find it very useful to get support from your own health practitioners or from disability organisations that have particular expertise in health problems like yours.