Continuing NHS Healthcare information booklet for individuals, families and carers - How CHC is organised if you are eligible

If you receive communication that confirms you are eligible to receive Continuing NHS Healthcare (CHC) it should also contain details of your care plan, or if your care plan is not known at that time you should receive information on what the next steps are.

The Local Health Board (LHB) is legally responsible to fund your care package from the time the Multi Disciplinary Team (MDT) met and made its determination of eligibility. If you have paid for your care or contributed to the cost of your care from this date, you can request the LHB refund these costs to you. However, if the MDT can identify the date that you first had a primary health need it should inform the LHB and you should have your reimbursement from that date.

Your care co-ordinator should contact you within 2 days of the MDT meeting. This is to ensure you fully understand the outcome and to answer any questions you may have.  

If you are eligible for CHC, within 2 weeks of the MDT meeting, your care package should be arranged. 

Your LHB should arrange your package of care within 8 weeks from any initial indication or assessment e.g the checklist, that took place that indicated you may have a primary health need. The 8 weeks includes any time you require for rehabilitation or reablement.

It may take longer than 8 weeks if you require a longer period of rehabilitation or reablement, but should not take longer in relation to delays in determining CHC eligibility or arranging a care package.

If you have a condition that is getting rapidly worse and your need for care and support is increasing, possibly because you may be approaching the end of your life, your hospital or care staff should contact an appropriate clinician to ask for a fast track CHC assessment. This would apply in other cases such as following a catastrophic event. The fast track assessment should be completed within 2 working days.

When an appropriate clinician recommends an urgent package of care through the fast track process, this should be accepted and put in place immediately by the LHB. The appropriate clinician would be a registered nurse or a medical practitioner who is responsible for your diagnosis, treatment or care. They should have an appropriate level of knowledge and experience of the type of health needs in question.

The LHB will work with you to decide on the care package that is appropriate to meet all your health and social care needs and help you to maintain your independence, taking your wishes and preferred outcomes into consideration.

In cases where you have been receiving social care, the LA’s assessment of your social care needs will be important in identifying your needs and in some cases the options for the LHB in meeting them.

Care planning for needs to be met under CHC should not be carried out in isolation from care planning to meet other needs, and, wherever possible, a single, integrated and personalised care plan should be developed.

The LHB will work closely with you to agree your CHC care plan and package of care in order to meet your assessed needs. It may be different to the package you received under your social care.

Having continuity of care and support has a considerable impact on a person's wellbeing and quality of life.

Your LA and LHB should work together to make every effort to avoid disruption to the care arrangements you already have in place, wherever possible, or to provide smooth and safe transition where change is required in your best interest.  

Voice and control, Direct Payments and CHC

If your care is funded by your LA, you may choose to receive this funding in the form of a direct payment (DP). A DP is money that your LA gives to you to spend on meeting your eligible care and support needs. The money can be spent on a wide range of products and services. DPs allow people to make their own choices about their care and support. The Social Services and Wellbeing (Wales) Act 2014 allows people to use DPs to pay for long term residential care as well as other services.

If you then become eligible for CHC, your LHB will pay for all of your health and most of your social care needs.  You may have concerns about being able to keep the care support staff you currently have as LHBs cannot provide DPs. In line with a person centred CHC process, if you are already using DPs to pay for social care when you become eligible for CHC, your LHB must work with you as an equal partner, to ensure you still have voice, choice and control over your care arrangements.

The LHB must work with you in a spirit of co-production and make every effort to maintain continuity of the personnel delivering your care, where you wish this to be the case and it can contribute to meeting your needs.

Although it is currently unlawful for DPs to be used to pay for healthcare or social care that the NHS is responsible for providing, it is not unlawful for LAs and LHBs to work together to provide you with voice and control in respect of your health and social care needs.

LHBs should consider a range of options to ensure you have voice and control over the care that you receive, including the following examples:

Maintaining staff

If you develop a primary health care need, the health board must work to maintain continuity of staff delivering care, where you wish this to be the case and it can contribute to meeting your needs. The health board could employ staff (either directly or via an agency), e.g. personal assistants, previously employed by you under direct payments.

Independent User Trusts

LHBs could also consider providing funding to an Independent User Trust, to manage your care. This is where a relative and/or other interested parties set up a trust which becomes the provider of your care. The LHB then pays the trust to provide specified health and social care services for you.

You may be able to keep some DPs for the parts of your care for which the LA is still responsible, e.g. opportunities for social inclusion. Partner organisations must work together to explore all the options available to maximise an individual’s independence.

Further guidance on these measures will be published on the Welsh Government website.

The LHB should work closely with you to determine your care plan and location of care, for example in your home, in a care home, in a supported living arrangement or in a hospice. When drawing up and agreeing the plan, your preferences and those of your relatives or advocate on how and where your care is provided should be taken into account. Your LHB should seriously consider your preferences, alongside any risks and benefits associated with different types of care and fair access to LHB resources.

The care plan will capture needs and the package of care should meet those needs fully. If you are not happy with the LHB’s proposed care package and cannot resolve your concerns informally, you should access the NHS complaints procedure (see contact details).

Your care package will be delivered by carers, district nurses and/or other appropriate staff in your home.

If you were living at home prior to being eligible for CHC and receiving DPs from your LA to directly fund your personal assistants, your LHB could utilise these staff, who may be family or friends who know your care needs very if they are trained and competent and able to meet your assessed healthcare needs.  As set out in the CHC National Framework “every effort should be made to maintain continuity of the personnel delivering the care, where the individual wishes this to be the case and it can contribute to meeting their needs.”

If you are reaching the end of your life it may be appropriate for you to receive your CHC in a hospice. However, the Welsh Government’s CHC National Framework recognises that you may wish to remain at home at this time.

Care home services are regulated by and registered with Care Inspectorate Wales under the Regulation and Inspection of Social Care (Wales) Act 2016. Some care home services include nursing care.

If you are eligible for CHC and need to live in a care home, the NHS makes a contract with the care home and pays fees covering your accommodation, board and to meet your assessed health and personal care needs. The following are some issues to be aware of:

• If it is agreed that you should move into a care home, your preferences are an important part of the evidence to be considered in choosing the most suitable care home to meet your needs.
• LHBs may have a contract with one or more care homes in the area, but your assessed needs will determine whether they are suitable. In exceptional circumstances, LHBs should consider requests for e.g. a larger room or a placement in a higher than usual cost care home and they should consider these on a “case by case basis”.  
• LHBs must discuss with you, your family or advocate the reasons for the preference. If you have clinical needs (for example, you have challenging behaviour and require a larger room because it is identified that your behaviour is linked to feeling confined, or if you consider that you would benefit from a care provider with specialist skills rather than a generic care provider), consideration should be given as to whether it would be appropriate for the LHB to meet this. If no clinical need is established the LHB will need to make a decision which balances your needs and preferences with the requirement for appropriate use of public funds.
• If you are already living in a care home and wish to remain there following your CHC assessment, the LHB would need to be satisfied that your assessed needs can be appropriately met. If it is not possible for your current care home to meet your needs, you will need to discuss your options with the LHB.

• If you are living in a care home when the decision to grant you CHC is made, you need to discuss with your LHB whether you can stay there. This is particularly relevant if your care home is more expensive than the LHB would normally pay to meet needs such as yours. This can happen if you have been self-funding your care or were part funded by the local authority with a relative or other third party ‘topping up’ to meet the fees.
• Topping up is allowed in social care but it is not allowed in care which the LHB is responsible for. In reviewing your current accommodation, the LHB should explore your reasons for wishing to remain in your current home/room and consider if there are any reasons you should stay there (this could include personal needs, such as proximity to close family members). Any possible risks of moving you would need to be assessed before a final decision was made. Such reasons could include for example, your frailty, mental health needs or other relevant needs you have which mean that a move to other accommodation could involve significant risk to your health and well-being.
• The CHC National Framework advises that if someone becomes entitled to CHC and they have an existing high-cost care package, LHBs should consider funding the cost of the existing higher-cost package until a decision is made on whether to meet the higher cost package on an ongoing basis or to arrange an alternative placement.

You may want to move to a care home that is closer to your family who live in another LHB area. You can suggest this to your LHB but it will be the LHBs decision whether to allow this. If your LHB agrees to your move to another LHB area they will still remain responsible for funding your CHC.

CHC reviews should primarily focus on whether your plan or arrangements remain appropriate to meet your needs.  It is expected that in the majority of cases there will be no need to reassess for eligibility. However, in some cases, people will move in and out of eligibility for CHC, depending on their needs.

You CHC will be reviewed within 3 months of your care plan being provided, unless this is triggered earlier by you or your family/representative or the provider. Following that it will be reviewed annually.  If your condition is expected to get worse, your care package should be reviewed more often.

If you have an obvious deterioration in circumstances, you should have a review within 2 weeks and changes should be made to your care package as needed.  The dates for your expected reviews should be provided to you.

If you are receiving secondary mental health services, legally, the LHB is required to review your care at least annually and in line with the Code of Practice to Part 2 and 3 of the Mental Health (Wales) Measure 2010.

If any of your care and support needs change, it may result in a change to your eligibility for CHC.  Neither your LHB nor your LA should decide to withdraw any existing funding arrangement without first taking a joint reassessment of your needs, consulting one another, and you, about any changes in the provision of your care.

Therefore, in order to ensure continuity of care, if there is a change in eligibility, it is essential that alternative funding arrangements are agreed and put into effect before any withdrawal of existing CHC funding. Any proposed change should be put in writing to you by the organisation that is proposing to make such a change. If the LA and LHB cannot agree upon the proposed change, the current funding arrangements should remain in place until their dispute has been resolved.

If you are unhappy with any part of the review you should speak to your co-ordinator. You can ask for a re-assessment of your needs and review of your care plan. If you are still unhappy with the result, you could make a complaint using the NHS Complaints process – Putting Things Right (see contact details).