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- What are the levels of need?
- What level of need do you have to have to be eligible?
- What are the Decision Support Tool care domains?
- How do assessors use the Decision Support tool to judge your care needs?
What is the Decision Support Tool?
Think of the Decision Support Tool as a set of standards by which your needs will be judged. It is usually completed by the multidisciplinary team after your assessment. As with the Checklist, it’s a way of providing a consistent assessment of your care needs. It cannot be completed without you having gone through the multidisciplinary team’s assessment. Importantly, it should be used as an aid. The National Framework says the Decision Support Tool is there ‘to facilitate consistent, evidence-based assessment’. The view of the assessor – based on the evidence provided during your assessment– is what’s ultimately important in terms of coming to a recommendation.What are the levels of need?
For each of the domains, your needs will be marked by a level of severity. These will inform the recommendation the assessors pass on to your CCG. They are:No needs | Low needs | Moderate needs | High needs | Severe needs | Priority needs |
---|---|---|---|---|---|
You don’t have any evidence of issues in the area. | Your life isn’t being impacted and care is effective. | Your needs impact your life but are manageable and predictable. | Your needs are impacting your life, support isn’t always effective. | Your needs are frequent and may present a risk to you and others. | Immediate intervention is required, you need constant care. |
What are the levels of need?
What level of need do you have to have to be eligible?

- A priority level of need in any of four ‘priority domains’, or
- Two or more ‘severe’ levels of need in any of the domains
- One domain recorded as ‘severe’, with a number of ‘moderate’ needs and above in a number of other domains, or
- A large number of domains in which you have ‘high’ and ‘moderate’ needs.
What are the Decision Support Tool care domains?
In the previous chapter, we’ve covered the care domains in quite a lot of detail. So you’ve probably got a good idea of what they are. At the Decision Support Tool stage, there is also an additional domain, ‘other significant care needs’. It’s there in case some of your requirements don’t neatly fit into the 11 prescribed care domains. To get an idea of the specific requirements for a high-priority level of need of the following domains, take a look at the criteria of anything that scores an A at the Checklist assessment.- Breathing
- Nutrition
- Continence
- Skin integrity
- Mobility
- Communication
- Psychological & emotional needs
- Cognition
- Behaviour
- Medication
- Altered states of consciousness
- Other significant care needs
How do assessors use the Decision Support tool to judge your care needs?
What’s important to understand is how each of the domains are assessed when someone is filling out the Decision Support Tool. The guidance notes for assessors asks them to consider specific questions around nature, complexity, intensity and unpredictability for each domain. They should also consider how these needs are likely to change in the future and discount how your needs are currently being met. Ahead of your assessment, you should prepare answers to these questions for each care domain – but especially those domains for which you received a higher score at the Checklist assessment:Nature
This looks at the specific detail of your needs and the type of support you require to live well with them. It’s important to put together responses for the following:- How does the individual or the practitioner describe the needs (rather than the medical condition leading to them)? What adjectives do they use?
- What is the impact of the need on overall health and well-being?
- What types of interventions are required to meet the need?
- Is there particular knowledge/skill/training required to anticipate and address the need? Could anyone do it without specific training?
- Is the individual’s condition deteriorating/improving?
- What would happen if these needs were not met in a timely way?
Intensity
This takes into consideration the number of health needs you have in each of the care domains and how severe each of these individual needs are. You should think about preparing answers for the following questions, for each care domain:- How severe is this need?
- How often is each intervention required?
- For how long is each intervention required?
- How many carers/care workers are required at any one time to meet the needs?
- Does the care relate to needs over several domains?
Complexity
The assessor will consider how much skill or equipment is needed as well as considering how you respond to support. As with the other characteristics, you should prepare answers for each of the domains for the questions assessors are guided to ask:- How difficult is it to manage the need(s)?
- How problematic is it to alleviate the needs and symptoms?
- Are the needs interrelated?
- Do they impact on each other to make the needs even more difficult to address?
- How much knowledge is required to address the need(s)?
- How much skill is required to address the need(s)?
- How does the individual’s response to their condition make it more difficult to provide appropriate support?
Unpredictability
This considers stability – how your needs change from one moment to next, what challenges this creates, and the level of risk to your health. Consider preparing answers to the following questions for each domain:- Is the individual or those who support him/her able to anticipate when the need(s) might arise?
- Does the level of need often change? Does the level of support often have to change at short notice?
- Is the condition unstable?
- What happens if the need isn’t addressed when it arises? How significant are the consequences?
- To what extent is professional knowledge/skill required to respond spontaneously and appropriately?
- What level of monitoring/review is required?
What happens after the NHS Continuing Healthcare Assessment?
After the team has completed the assessment and completed the Decision Support Tool, they’ll pass a recommendation about your eligibility to your CCG. Ultimately, it’s then up for the CCG team to decide whether or not you’re approved for Continuing Healthcare.
You should hear back within 28 days. However, research by the Continuing Healthcare Alliance has found that as many as 42% of people wait longer for a result – with little or no communication. If this happens to you, you should contact your Continuing Healthcare team.
Along with the decision of whether or not you’ve been approved, you’ll also be informed about the level of support available to you.
Care and support planning
If you’re eligible, you’ll go into care and support planning. With the help of your assigned caseworker, usually a social worker or occupational therapist, this is the stage where you decide on the options that are best for you.
For many, the extensive nature of their needs will mean a nursing home is the only realistic option. But, for a lot of people, this could mean you’re able to get care in your own home. At this point, it’s crucial that you’re vocal about what you think is best.
Your CCG has to work with you in collaboration – appreciating your wishes. As with the assessment stage, the National Framework for Continuing Healthcare specifically states that you should be involved in decision making.
To take control of your funding, you can request a Personal Health Budget.
What is a personal health budget?
A personal health budget has been the default option for NHS Continuing Healthcare since April 2019. It’s when a monetary value is put on your NHS Continuing Healthcare entitlement. You then have a number of options around how you want this to be administered.
For example, you can choose to take this as a direct payment, which puts you in control of the type of care you want to receive.
This is often the best choice for those who have decided care in their own home is their favoured solution. The aim is to give people more control and choice around deciding what suits them best.
Don’t take no for an answer
If you’re accepted to take your NHS Continuing Healthcare funding as a personal budget, you should usually be entitled to be paid it as a direct payment. This puts you in control of the care you want to receive. If you’re told this is not suitable, you should ask why. Be prepared to stand your ground. And remember, you ultimately know what’s best.
For those taking a Personal Health Budget, your CCG should work with you and your family to create a personalised care plan. This should consider your health and wellbeing goals and be informed by the assessment you’ve received.
You’ll be given a monetary value for the amount you’re able to spend on care, which should cover costs in full. Once you receive this, you’ll have the option to take the money as a direct payment or a notional budget.
How is your personal health budget paid to you?
There are three main ways your personal health budget can be spent. And, most of the time, it’ll be up to you to decide on what you think is best for your situation.
A direct payment | A notional budget | A third party arrangement |
---|---|---|
You take control over the management of your plan, and simply have to keep evidence to show you’ve spent the money on care. | You’re still able to have significant input into the type of care you go with, but the NHS will arrange it for you. They’ll pick the care provider. | A third party, such as a trust, controls the money and manages your care and budget, in accordance with your agreed care plan. |
While there’s no doubt taking a notional budget is often the easier solution, it’s also often less tailored to your needs. You ultimately don’t get the same amount of say on what happens next as you do with a direct payment.
Appealing a decision if you’re not eligible
Getting turned down for Continuing Healthcare can feel daunting and occasionally upsetting. However, there are always next steps. The first step is to appeal, then it’s time to look at other funding options.Along with the decision not to progress your Continuing Healthcare, your local CCG should provide you with information on how to appeal – as well as the reports from the Decision Support Tool or Checklist assessment.
You’ll have six months from the initial decision to request a review. Here’s how the appeals process works:
1. Write to your local CCG
You should write a formal letter to your local Continuing Healthcare team. This should include the reasons why you feel the outcome wasn’t correct. You should also make sure you explicitly state the course of action you’d like them to take.
Usually, it’s likely you’ll be asking for reassessment. This should be relatively easy for the Checklist stage. However, for the full assessment, you’ll have to show that it wasn’t carried out properly. You should make it clear in your letter that you intend to provide evidence.
Your CCG has five days to acknowledge your request.
2. Provide evidence to support your claim
This is where it’s really important that you’ve documented your full application process, as well as making sure you’ve kept a diary of your care needs.
If you’re unhappy with the assessment results for a specific care domain, you should be completely clear on which care domain you’re unhappy with. And, in reference to this, you should provide practical examples of why you believe this decision to be wrong.
You should submit your evidence as a written appeal to your local CCG.
3. Appeal review and reassessment
Once you’ve submitted your evidence, your CCG has three months to look through everything you’ve provided and work out what to do next. If they deem that you should be reassessed for Continuing Healthcare, that should also be completed within this time.
Once you’ve undergone your reassessment, your CCG should get back to you within 28 days.
4. Request an independent review
If you’re found to not be eligible for Continuing Healthcare the second time round, you are able to escalate the matter to NHS England for an Independent Review Panel.
This is where a team without prior knowledge of your case looks at your care records and your Continuing Healthcare application process in detail. It should be completed within three months of your request.
Following your review, you should hear back within six weeks.
5. Write to your local MP
If all of the previous steps prove to be unsuccessful, and you’re confident you should be eligible, it’s time to write your Member of Parliament. Make sure you provide a good summary of your case.
The MP’s Caseworker will liaise with you to get all the details of your case. Usually, it’s best to request a meeting with your MP in person. This can be at one of their regular surgeries, or by appointment.
Once you’ve explained your case, the MP and their staff will liaise with your local CCG and fight your corner.
Your local MP will always get back to you provided you’re their constituent.
Getting NHS-Funded Nursing Care
If you’re not eligible for Continuing Healthcare funding, that doesn’t mean you’re unable to get any funding from the NHS.
NHS-Funded Nursing Care is when the health service pays for the nursing component of your care. This is anything that has to be delivered by a registered nurse.
Tasks that a nurse has to perform include more complex tasks around monitoring or managing your condition.
You’ll only be able to use NHS-funded Nursing Care if you’re in a residential home. But – as with Continuing Healthcare – your financial situation is not taken into account.
How much is NHS-Funded nursing care?
NHS-Funded nursing care has two rates. It’s tax-free and doesn’t impact your other benefits.
- The standard rate for NHS-Funded nursing is £187.60 per week.
- The higher rate – for those with more acute needs – is £258.08 per week.