If you have received a Checklist assessment – which is the first stage of the assessment process – and you do not fulfil the criteria for a full assessment, you can ask the Clinical Commissioning Group (CCG) to reconsider its decision. Following completion of the Checklist you should have received a decision letter which explains why you are not eligible for a full assessment and your rights to challenge that decision. If not, you should contact the professional who completed the Checklist or your CCG. You can find contact details for your CCG by searching for ‘services near you’ here.

If the decision remains the same after the CCG has reconsidered it, you have the right to access the NHS complaint procedure. This is a 2-stage process which consists of:

A. Sending a written complaint to the CCG complaint manager setting out the reasons why you feel you are entitled to a full assessment and why you disagree with the Checklist outcome. It is a good idea to specify which areas of need (domains) you disagree with and provide any evidence that will support your views, such as care plans, GP records or hospital records. Complaints must be properly investigated and you should receive a full reply.

B. If you still remain dissatisfied with the CCG’s response you can refer your complaint to the Parliamentary and Health Service Ombudsman by visiting www.ombudsman.org.uk or phoning 0345 0154033.

If you have received a full continuing healthcare assessment and disagree with the outcome, you have the right to appeal. You can appeal if you disagree with the eligibility decision or the procedures used by the CCG to come to that decision. You should have received a decision letter from your Clinical Commissioning Group (CCG) containing a rationale for how the decision was made which should help you to prepare for your appeal. The letter should also explain how to contact the CCG if you wish to appeal.

To request a review of the CCG’s decision and begin the appeal process it is normally necessary to write to the CCG outlining your reasons for requesting a review. Our Navigational Toolkit provides you with step by step guidance as to what to consider and how to write your appeal letter.

The appeal process normally consists of three stages:

A. The first stage of appeal is through the CCG’s local review process which may vary depending on where you live, but often involves a resolution meeting with the CCG continuing healthcare team. During the review process the CCG should try to resolve the matter informally without the need for further appeal stages. The CCG may also decide to convene a fresh local panel to reconsider the eligibility decision if they believe there is evidence available which has not previously been considered or the original decision may be unsound.

B. The second stage of appeal is to refer your case to NHS England for an Independent Review (IR). Your local CCG should provide you with information about how to refer your case for an IR at the end of the local review stage. An IR provides a formal review of the CCG’s decision and the procedure it followed using a panel of experienced health and social care professionals independent of the CCG that carried out the assessment. You will be invited to attend part of the panel hearing to present your reasons for appealing and to answer any questions the panel may have about your specific needs. The IR will make a recommendation to the CCG which should be accepted in all but exceptional circumstances.

C. The third stage is to refer your case to the Parliamentary and Health Service Ombudsman for review and possibly a full independent investigation. Depending on this outcome, there may be further local appeal stages involved.

The first two stages should not normally take longer than 3 months each to complete however in reality it is not uncommon for appeals to take well over a year or require multiple panels before all available appeal options have been exhausted. For comprehensive advice about how to prepare for appeal please download or request a copy of our free Navigational Toolkit.

When your continuing healthcare assessment has been completed you should receive a decision letter informing you of the outcome and explaining how the eligibility decision was reached. It will also state how long you have to appeal the decision.

Following completion of the local review stage you then have six months from the day you are notified of the CCG’s decision, to request an Independent Review (IR). NHS England will send you a form, Application for Independent Review. You have six weeks from the date you’re sent this to submit all your evidence, and supporting statements. NHS England aim to convene an IR within 3 months of your request.

Prior to March 2010 Primary Care Trusts had the flexibility to choose whether they wished to continue funding people who were previously eligible for continuing healthcare but had been assessed as ineligible at their annual review during the appeal process. Local processes were established between primary care trusts and Local Authorities to ensure that patients would not fall into a funding gap between health and social care just because they wanted to appeal an eligibility decision. If the person in question ultimately lost their appeal, it was unusual for the PCT to try to reclaim funding back from the individual.

This changed in March 2010 when the Department of Health issued new refunds guidance. According to this guidance, the existing status remains until the PCT (now CCG) decision regarding eligibility is made. So if you are assessed as no longer eligible for continuing healthcare then the CCG can stop the funding regardless of whether or not you decide to appeal, so long as the CCG has provided you with a reasonable notice period (usually 28 days). If you ultimately win your appeal then the CCG must refund the cost of your care backdated to the point at which funding ceased.

This does not alter the duty CCGs and Local Authorities have to ensure that alternative arrangements are in place for you if you still require elements of social care.

Many CCGs hold resolution meetings as part of their local review process but the term ‘resolution’ is perhaps a little misleading. In our experience this stage of appeal rarely leads to resolution. This is because CCGs are often unwilling to overturn a decision that is based on a detailed assessment without it being fully re-considered by a multidisciplinary team or panel. Likewise, the person who has asked for a review is unlikely to accept the eligibility decision without it being formally reconsidered. Instead, resolution meetings tend to be a good opportunity for people to find out more information about how the decision was reached and to raise any concerns they may have about, for example, the assessment procedure or the evidence used.

As long as resolution meetings are carried out in an inclusive and informative way our clients generally find them to be a useful first stage in the appeal process. However, more often than not people will proceed to further stages of appeal.

If the CCG incorporates a review panel or review Decision Support Tool into their local review process then there is more chance of an incorrect eligibility decision being overturned without the need for the case to progress to the next stage of appeal. NHS England are keen to ensure that disputes are resolved at a local level wherever possible, however the likelihood of this is influenced greatly by the quality of each CCG’s local review process.

If you have not done so already, we would recommend that you come to any resolution meeting or review panel prepared to talk about your reasons for disagreeing with the eligibility decision. You can use the step by step guidance as to what to consider when you write your appeal letter in our Navigational Toolkit to help you.

We strongly recommend that whoever is attending the meeting comes prepared to talk specifically about how the needs of the person who has been assessed relate to the care domain levels of need in the Decision Support Tool, the assessment procedures used by the CCG and the overall eligibility decision. You may find it useful to make a note of the most important items you want to discuss with the CCG in advance.

There is often a gap of a few weeks between your request for a review of the decision, and the start of the local review stage. If you are uncertain about whether the Decision Support Tool (DST) provided a completely accurate portrayal of your needs you may find it useful to ask a friend or relative to keep a detailed diary of how you presented during their visits and compare this to the DST. Be aware though that needs can change over time and you may not present with exactly the same needs as you did at the time of assessment.

Yes and we strongly recommend that you do, if at all possible. NHS England should invite you or your representative to attend the panel and to submit any supporting information you wish to include in the evidence pack. NHS England should also provide you with an agenda so that you can see how the panel will be run and which parts you will be invited to contribute to. It is normal for people to be given time at the beginning of the Independent Review (IR) to explain why they disagree with the CCG’s eligibility decision, to present their views about the person’s care needs and to highlight any concerns that you may have about the CCG’s assessment procedures.

Our top tips for preparing for an IR are:

• Write down everything you want to tell the IR about your reasons for disagreeing with the eligibility decision
• Send NHS England everything you think may be relevant
• Make sure the IR is reviewing the right time period and stick to it
• Read the evidence file thoroughly
• Help the panel to understand the ‘person’
• Understand the panel’s remit

More information on each of these topics is available in our Navigational Toolkit.

Independent Reviews (IRs) must be independent of the Clinical Commissioning Group (CCG) that was responsible for assessing you for continuing healthcare. IR members will be made up of health and social care professionals in decision making roles and also specialist clinical advisers in non-decision making roles. These professionals may well be employed by the NHS or a Local Authority in a different area. Because continuing healthcare assessments are multidisciplinary, IRs which are set up to review eligibility decisions must also be multidisciplinary.

IRs should be chaired by chair people who are currently independent of the NHS and of social services, and they can also act in a decision making capacity. This ensures that IRs have an influential member on the panel who is fully independent of the NHS.

No, you can ask for a review of the eligibility decision if you disagree with the decision itself or with the procedure followed by the CCG in reaching that decision. You cannot appeal against the continuing healthcare criteria since CCGs have no influence over the criteria that they must use, but you can appeal if you disagree with how the criteria have been applied.

Almost certainly not for two reasons. Firstly, eligibility is based upon the presence of a primary health need which is established through an in-depth assessment process in which a multidisciplinary team fully assesses the totality of your needs. Unless the independent firm had been through this comprehensive assessment process with you, it is very unlikely that they would be in a position to know whether you are eligible just by filling out a form or having a brief chat with them.

Secondly, eligibility cannot be guaranteed unless they are certain that you had either two ‘Severe’ levels of need or a ‘Priority’ level of need across the care domains in the Decision Support Tool, and had the evidence to demonstrate this combination of needs. In our experience relatively few individuals are assessed with this combination of needs.

If you have received assurances from anyone that they can ‘guarantee’ your ‘claim’ for continuing healthcare we would advise you to carefully check exactly what grounds they base their conclusions on and be certain that they have considerable experience in dealing with continuing healthcare cases before going any further.

Appealing a continuing healthcare assessment is challenging and time-consuming, but it is not impossible to work through independently. With the right information and guidance it is possible to gain a sufficient understanding of the criteria and processes to challenge an incorrect eligibility decision or poor assessment procedure on your own. We hope that our free Navigational Toolkit will enable many more people to do so.

It is important to note that CCGs and NHS England have a scrutiny and reviewing role in the appeal process, they employ health and social care professionals and not legal professionals to do this. The appeal process is not a legal process and legal submissions will not be heard by review panels. At each stage of the assessment and appeal process, the people making decisions regarding your eligibility for continuing healthcare are health and social care professionals whose job it is to apply a set of health criteria. Therefore it is neither required nor advisable to focus an appeal on the intricacies of case law when the remit of the panel is to understand your care needs and apply eligibility criteria to them. For this reason it is not necessary to use a solicitor to appeal your assessment, in fact the guidance recommends against having legal representation at appeal panels. There is a place for the legal process, but this generally comes after the appeal process has been exhausted.

Due to the highly specialised nature of NHS continuing healthcare it is important that you find an organisation with the right expertise and considerable experience in the field to support you, if you feel that you need advocacy. Our Navigational Toolkit contains a checklist of information that can help you select the right expert representation and advice during this process.

All requests for appeal or review must be taken seriously by your Clinical Commissioning Group and responded to promptly. Our caseworkers have over 13 years’ experience in managing continuing healthcare appeals and some have previously worked within continuing healthcare for NHS trusts.

In our experience, appeals that are managed by representatives with a thorough understanding of assessment procedures and an ability to present a clear and logical case, backed up by evidence, are the most useful to both their client and to a review panel. This is because such knowledge will enable them to identify and robustly challenge poor assessment procedures whilst providing panel members with a clear and detailed understanding of the individual’s care needs and why they feel those needs meet the criteria.

Providing the representative or advocate is able to do this, it does not matter whether they are a qualified solicitor, health professional, or volunteer advocate. However, if that representative presents a case that consists of generic references to case law and concepts from the National Framework with little or no attempt to present a persuasive argument built around a thorough understanding of their client’s care needs, they will not have represented their client effectively. All in all, challenges from solicitors or MPs are given no more weight than from members of the public. It is the content of the challenge that matters.

The assessment process is lengthy and can be complicated by a number of factors and yet it is crucial that assessments are carried out according to the processes detailed in the National Framework. Not following standard procedures can result in an inaccurate assessment or unfair eligibility decision.

Having successfully appealed hundreds of cases the most common procedural failings we have encountered and challenged are:

• Checklist decisions overturned without appropriate evidence or the involvement of any of the multidisciplinary team
• Individuals or their representatives not being provided with opportunities to engage in the assessment process
• Re-interpretation of the descriptors within certain care domains
• Inappropriately constituted multidisciplinary teams, or health and social care professionals being excluded from the process
• No clear multidisciplinary team recommendation regarding eligibility
• CCG decision making panels overturning recommendations of multidisciplinary teams when there are no exceptional circumstances to justify their decision
• Eligibility decisions that bear little resemblance to decisions made about the same individual using the same criteria in a previous assessment because the application of the criteria has been reinterpreted

It is important that where procedural failings are identified these are brought to the attention of the CCG responsible and robustly challenged.