Have you heard about the Gunter Case? Getting the NHS to pay for care in a residential or nursing home is difficult enough, but those wishing to stay in their own homes following an award of CHC funding face an even greater struggle. Because the cost of providing 24-hour healthcare at home is comparatively higher, Clinical Commissioning Groups (CCGs) are often reluctant to agree to fund such packages, even if the patient expresses a clear desire to remain in their own home.
As the cost of care increases and CHC budgets are slashed, many families are told their relative will have to move into a residential facility in order to receive long-term NHS funding. Over recent decades, we have seen the scandal of people being forced to leave their homes in order to secure CHC funding, which may be provided in any setting.
Worried about having to sell your home to pay for care? Read more here.
Similarly, adults with complex needs – such as learning difficulties, challenging behaviours and epilepsy – are often told they cannot remain at home with their families and must move into a residential care facility in order to receive the CHC funding on which they rely.
This has been interpreted by many as CCGs placing a “cap” on the cost of CHC packages, contrary to the wishes of the individual, which would not comply with paragraph 63 of the National Framework for NHS Continuing Healthcare:
“NHS Continuing Healthcare may be provided in any setting (including, but not limited to, a care home, hospice or the person’s own home). Eligibility for NHS Continuing Healthcare is, therefore, not determined or influenced either by the setting where the care is provided or by the characteristics of the person who delivers the care.”
Crucially, in forcing people out of their homes and into residential facilities, CCGs have been accused of contravening Article 8 of the European Convention on Human Rights, which enshrines the right to respect for private and family life:
“1. Everyone has the right to respect for his private and family life, his home and his correspondence.
- There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.”
So, what are the rules when it comes to receiving a CHC package at home? Must care always be provided according to the patient’s wishes, or are there occasions where the CCG can force the patient into a care facility in order to receive CHC?
Rationing NHS Continuing Healthcare Funding – The ‘NHS’s Best Kept Secret’
Paragraph 172 of the National Framework underlines the CCG’s role in assessing the patient’s needs and providing an appropriate package of care to meet them, reminding the CCG it must have “due regard” to the patient’s wishes in doing so:
“Where a person qualifies for NHS Continuing Healthcare, the package to be provided is that which the CCG assesses is appropriate to meet all of the individual’s assessed health and associated care and support needs. The CCG has responsibility for ensuring this is the case, and determining what the appropriate package should be. In doing so, the CCG should have due regard to the individual’s wishes and preferred outcomes.”
Paragraph 177 confirms that CCGs can take comparative costs into account and provides further clarity as to the recommended process for agreeing on the package of care to be provided, again highlighting the importance of the patient’s preferences, which should be the starting point of all discussions:
“The starting point for agreeing the package and the setting where NHS Continuing Healthcare services are to be provided should be the individual’s preferences. In some situations a model of support preferred by individuals will be more expensive than other options. CCGs can take comparative costs and value for money into account when determining the model of support to be provided, but should consider the following factors when doing so:
a) The cost comparison has to be on the basis of the genuine costs of alternative models. A comparison with the cost of supporting an individual in a care home should be based on the actual costs that would be incurred in supporting a person with the specific needs in the case and not on an assumed standard care home cost.
b) Where a person prefers to be supported in their own home, the actual costs of doing this should be identified on the basis of the individual’s assessed needs and agreed desired outcomes. For example, individuals can sometimes be described as needing 24-hour care when what is meant is that they need ready access to support and/or supervision. CCGs should consider whether models such as assistive technology could meet some of these needs. Where individuals are assessed as requiring nursing care, CCGs should identify whether their needs require the actual presence of a nurse at all times or whether the needs are for qualified nursing staff or specific tasks or to provide overall supervision. The willingness of family members to supplement support should also be taken into account, although no pressure should be put on them to offer such support. CCGs should not make assumptions about any individual, group or community being available to care for family members.
c) Cost has to be balanced against other factors in the individual case, such as an individual’s desire to continue to live in a family environment (see the Gunter case in Practice Guidance note 46).”
However, while the patient’s preferences are the “starting point”, subsections a), b) and c) make clear that the CCG must take cost into account and is not obliged to adhere to the patient’s wishes in every case, should a cheaper alternative be available.
Are you making a retrospective claim for CHC funding? 10 things you need to know first.
Section 45.1 of the National Framework Practice Guidance specifically raises the question: “Can CCG’s take comparative costs and value for money into account when determining the model of support to be provided to the individual?” The answer is a definitive “yes”:
“In some situations a model of support preferred by the individual will be more expensive than other options. CCGs can take comparative costs and value for money into account when determining the model of support to be provided, but should consider the following factors when doing so:
- The cost comparison has to be on the basis of the genuine costs of alternative models. A comparison with the cost of supporting a person in a care home should be based on the actual costs that would be incurred in supporting a person with the specific needs in the case and not on an assumed standard care home cost.
- Where a person prefers to be supported in their own home, the actual costs of doing this should be identified on the basis of the individual’s assessed needs and agreed desired outcomes. For example, individuals can sometimes be described as needing 24-hour care when what is meant is that they need ready access to support and/or supervision. CCGs should consider whether models such as assistive technology could meet some of these needs. Where individuals are assessed as requiring nursing care, CCGs should identify whether their needs require the actual presence of a nurse at all times or whether the needs are for qualified nursing staff or specific tasks or to provide overall supervision. The willingness of family members to supplement support should also be taken into account, although no pressure should be put on them to offer such support. CCGs should not make assumptions about any individual, group or community being available to care for family members.
Cost has to be balanced against other factors in the individual case, such as an individual’s desire to continue to live in a family environment (see the Gunter case in Practice Guidance note 46).”
Again, CCGs are reminded of the importance of taking an individualistic approach to such decisions, which should balance the requirement to provide value for money with the preferences and needs of the person receiving the care package.
Practice Guidance section 46 provides a specific example, with reference to the case of Gunter vs. South Western Staffordshire Primary Care Trust, considered by the Hight Court in 2005:
“In the case of Gunter vs. South Western Staffordshire Primary Care Trust (2005), a severely disabled woman wished to continue living with her parents whereas the PCT’s preference was for her to move into a care home. Whilst not reaching a final decision on the course of action to be taken, the court found that Article 8 of the European Convention of Human Rights had considerable weight in the decision to be made, that to remove her from her family home was an obvious interference with family life and so must be justified as proportionate. Cost could be taken into account but the improvement in the young woman’s condition, the quality of life in her family environment and her express view that she did not want to move were all important factors which suggested that removing her from her home would require clear justification.”
Read the High Court’s judgment in full here.
Rachel Gunter was 21 at the time of the High Court’s judgment. Emergency surgery to remove a tumour on her brain a decade earlier had resulted in two major strokes, causing damage to over 70% of her brain, which left her severely disabled and permanently blind. In addition, Rachel suffered from a rare and complex form of Diabetes – Diabetes Insipidus – which required continuous skilled management and, in the event of a crisis, administration of necessary medication within no more than 5 minutes. As a result of her complex, intense and unpredictable needs, Rachel required 24-hour nursing care, with access to a registered nurse within a maximum of 5 minutes at all times.
In October 2003, after considerable difficulty in finding the right level of support, Rachel was finally admitted to the Head Injury Rehabilitation Centre in Bath, boarding there throughout the week and spending weekends at home with her parents. Considerable improvements to Rachel’s condition and functioning were achieved; she was able to make some decisions for herself, which had the added benefit of increasing her confidence. Her rehabilitation team highlighted the importance of the correct care package on discharge to ensure this remarkable progress was maintained.
Turned down for CHC? Should you continue to pay fees while your appeal is ongoing?
In early 2005, Rachel was well enough to be discharged and return to live with her parents. However, her father complained that the then PCT (Primary Care Trust, now CCG) had failed to agree to a suitable long-term package of care, causing problems in securing appropriately skilled care and meaning Rachel’s parents were obliged to deliver much of her care themselves, which was not sustainable as they got older. The PCT raised concerns about the considerable cost of providing an appropriate nursing package to Rachel in her own home, citing a £150,000 annual difference, when compared with the cost of a similar residential nursing package.
Despite good intentions and best efforts from all parties, the PCT and the Gunters could not reach agreement. Out of concern for their daughter’s future, and as a result of ongoing problems in securing appropriately experienced carers, Mr. and Mrs. Gunter instructed solicitors, who eventually put the case before the High Court for Judicial Review.
Losing faith in the NHS Appeals Process? Don’t give up!
While the Court was unable to determine who was “right”, it did provide some helpful clarity as to the most important factors to be considered by the PCT in deciding whether Rachel should continue to be cared for at home. In its review of Rachel’s case, the Court found that Article 8 of the European Convention on Human Rights held “considerable weight” and must be given due consideration by the PCT when making its decision. To force Rachel to leave her home, contrary to her expressed wishes, would clearly interfere with her right to privacy and family life and so must be proportionate and balanced by a suitable justification. That Rachel had continued to improve under her mother’s expert care and had clearly expressed her desire to remain at home were crucial factors that the PCT must balance against the excess cost of providing such a package of care.
How to apply the well-managed needs principle in applications for CHC funding.
CHC at home – key points to remember:
- Eligibility for CHC funding is not dependent on setting and may be provided in the patient’s own home.
- However, when agreeing on a package of care, CCGs can take comparative costs into account and, indeed, have an obligation to the taxpayer to ensure value for money.
- Where comparative costs are to be considered, the cost comparison has to be on the basis of the genuine costs of alternative models. The same principle applies when considering the comparative cost of providing care at home, rather than in a residential facility.
- While CCGs have ultimate authority in respect of the care package to be provided, they must have “due regard” to the patient’s wishes.
- Where a patient expresses a wish to receive care at home, the CCG must take into account Article 8 of the European Convention on Human Rights, which enshrines the individual’s right to privacy and family life. Any decision to remove the individual from their home, contrary to their wishes, must be proportionate and clearly justified.
- Costs must be balanced against the individual factors of the case, about which generalisations should not be drawn. In Ms. Gunter’s case, her clearly expressed desire to remain at home and the considerable improvement in her health and wellbeing under the existing package were crucial factors to be considered.
If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our Contact Us page with the subject “blog request” or mention in the comments below and we’ll do our best to cover your suggested topic.
 |
 |
Carers are entitled to an assessment of their own health and social care needs. This may include help with short-term care for the person they look after. Direct payments are intended to support adults who live independently in their own homes. If your local Trust agrees that you need a temporary stay in a home (usually no more than four weeks), you may be able to use your direct payments to pay for it.
The Government needs to make up their mind. One minute we are told they want to keep people at home, then we are told they want people to go into care. I think it is an awful truth the care needs of people are being based on funding again.