The health, social care and education system for families living with a disabled child or adult in the UK is a minefield. I hope this page proves useful. The information comes from the NHS Choice's website.
NHS continuing healthcare is the name given to a package of care that is arranged and funded solely by the NHS for individuals who are not in hospital but have complex ongoing healthcare needs.
NHS continuing healthcare can be provided in a variety of settings outside hospital, such as in your home or in a registered care home.
To be eligible for NHS continuing healthcare, you must be assessed by a team of healthcare professionals (a "multi-disciplinary team") as having a "primary health need". Whether or not someone has a primary health need is assessed by looking at all of their care needs and relating them to:
Your eligibility for NHS continuing healthcare depends on your assessed needs, and not on any particular diagnosis or condition. If your needs change then you eligibility for NHS continuing healthcare may change.
You should be fully involved in the assessment process and kept informed, and have your views about your needs and support taken into account. Carers and family members should also be consulted where appropriate.
A decision about eligibility should usually be made within 28 days of it being decided that the person needs a full assessment for NHS continuing healthcare.
If you aren't eligible for NHS continuing healthcare, you can be referred to your local authority who can discuss with you whether you may be eligible for support from them. If you still have some health needs then the NHS may still pay for part of the package of support. This is sometimes known as a "joint package" of care.
Clinical commissioning groups, known as CCGs (the NHS organisations that commission local health services), must assess you for NHS continuing healthcare if it seems that you may need it.
For most people, there is an initial checklist assessment, which is used to decide if you need a full assessment. However, if you need care urgently – for example, if you’re terminally ill – your assessment may be fast-tracked.
The initial checklist assessment can be completed by a nurse, doctor, other healthcare professional or social worker. You should be told that you’re being assessed, and be asked for your consent.
Depending on the outcome of the checklist, you will either be told that you don't meet the criteria for a full assessment of NHS continuing healthcare and are therefore not eligible, or you will be referred for a full assessment of eligibility. Being referred for a full assessment doesn’t necessarily mean that you will be eligible for NHS continuing healthcare. The purpose of the checklist is to enable anyone who might be eligible to have the opportunity for a full assessment.
The professional(s) completing the checklist should record written reasons for their decision, and sign and date the checklist. You should be given a copy of the completed checklist. You can download a blank copy of the NHS continuing healthcare checklist from GOV.UK (PDF, 168kb).
Full assessments for NHS continuing healthcare are undertaken by a "multi-disciplinary" team made up of a minimum of two health or care professionals who are already involved in your care. You should be informed who is co-ordinating the NHS continuing healthcare assessment.
The team’s assessment will consider your needs under the following headings:
These needs are then given a weighting marked "priority", "severe", "high", "moderate", "low" or "no needs".
The multi-disciplinary team will consider:
If you have at least one priority need, or severe needs in at least two areas, you should be eligible for NHS continuing healthcare. You may also be eligible if you have a severe need in one area plus a number of other needs, or a number of high or moderate needs, depending on their nature, intensity, complexity or unpredictability.
In all cases, the overall need, and interactions between needs, will be taken into account, together with evidence from risk assessments, in deciding whether NHS continuing healthcare should be provided.
The assessment should take into account your views and the views of any carers you have. You should be given a copy of the decision documents, along with clear reasons for the decision.
If someone’s condition is deteriorating quickly and they are nearing the end of their life, they should be considered for the NHS continuing healthcare fast track pathway, so that an appropriate care and support package can be put in place as soon as possible – usually within 48 hours.
If you are eligible for NHS continuing healthcare, the next stage is to arrange a care and support package which meets your assessed needs.
Depending on your situation, different options could be suitable, including support in your own home and the option of a personal health budget. If it is agreed that a care home is the best option for you, there could be more than one local care home that is suitable.
Your CCG should work collaboratively with you and consider your views when agreeing your care and support package and the setting where it will be provided. However, they can also take other factors, such as the cost and value for money of different options, into account.
If you are eligible for NHS continuing healthcare, your needs and support package should normally be reviewed within three months and thereafter at least annually. This review will consider whether your existing care and support package meets your assessed needs. If your needs have changed, the review will also consider whether you are still eligible for NHS continuing healthcare.
Personal health budgets are being introduced by the NHS to help people manage their care in a way that suits them. They have been piloted in a number of places across England and, from April 2014, anyone receiving NHS continuing healthcare will have a right to ask for a personal health budget.
The ‘right to ask’ will become a ‘right to have’ from October 2014. April 2015 will see the introduction of anyone, child or adult living with a long-term conditions has the right to request a personal health budget.
A personal health budget is an amount of money to support your identified health and wellbeing needs, planned and agreed between you and your local NHS team. The aim is to give people with long-term conditions and disabilities greater choice and control over the healthcare and support they receive.
Together with your NHS team (such as a GP) you will develop a care plan. The plan sets out your personal health and wellbeing needs, the health outcomes you want to achieve, the amount of money in the budget and how you are going to spend it. You can use a personal health budget to pay for a wide range of items and services, including therapies, personal care and equipment. This will allow you more choice and control over the health services and care you receive.
You don’t have to change any healthcare or support that is working well for you just because you get a personal health budget, but if something isn’t working, you can change it.
The first group to be able to ask for a personal health budget, from April 2014, will be people getting NHS continuing healthcare, which is NHS-funded long-term health and personal care provided outside hospital.
Local NHS organisations will be free to offer personal health budgets to other people if they think an individual will benefit. Current plans include the option of a direct payment for healthcare across England from autumn 2013. It is the government’s long-term aim, to introduce a right to a personal health budget for people who would benefit from it.
Yes. If you already have a personal budget for care and support from social services and your NHS team agrees, you can also have a personal health budget and ask for both to be combined.
No. If having a personal health budget does not work for you, your local NHS will provide the care you need as it has always done.
What is the difference between a personal health budget, a personal budget, an individual budget and a direct payment?
For more information Visit the peoplehub website, where people with a personal health budget and their families and carers can talk about their personal health budget experiences. And also NHS Choices Website.
We have had a personal health budget for our daughter for close to two years now. Having had a bad experience of care from the charitable sector, we wanted to ensure that our daughter had the care that she deserved. We wanted a package that was child focused and individualised which not only met her needs but also the changing needs of our family. Personal health budget gives us freedom to use NHS funds in a way which meets our daughters needs, give her quality of life but also to expand her social networks and friendships. We are so thankful that this is available to us and peoplehub a community interest company is working to improve access to PHB, and in particular children's PHBs which is emerging. This is the third Individual Health and Outcomes Plan (IHOP) I have written and it is getting easier, because when it's something that has such a positive impact on a young disabled person, getting it right is essential.