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Personal Health Budgets and NHS Continuing Health Care

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Disability Rights UK Factsheet F41

Your feedback wanted

The Care Quality Commission (CQC) have recently launched their new ‘Tell Us About Your Care’ partnerships with a number of national charities, of which Disability Rights UK is one. This involves Disability Rights UK gathering feedback from disabled people about their experiences of using health and social care services. The CQC would welcome feedback on your experience of using any of the services they regulate. Please click here to do so. 

Your primary healthcare needs

If you have a primary healthcare need, you can receive free care and support funded by the National Health Service NHS to enable you to meet your healthcare needs. Those needs should be classed as ‘primary need’ for healthcare which are beyond those that your local authority has a duty to meet, due to the level of the health-related element.

You may be able to get NHS continuing healthcare, also known as "fully funded NHS care", at no cost to you as most healthcare is free at the point of delivery. Health bodies may refuse to provide services if they don’t consider your healthcare needs as ‘primary’. NHS continuing healthcare is for adults. Children and young people could receive a "continuing care package" if they have needs arising from disability, accident or illness that can't be met by existing universal or specialist services alone. You can search the children and young people’s continuing care national framework for further information.

The legislation for assessment procedure in England

The assessment procedure for NHS CHC in England is found in the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care. This guidance outlines the criteria under which the NHS should fully fund your healthcare to determine that your primary need is a health need. The eligibility for NHS continuing healthcare is the same across England, and the same assessment procedures are followed.

Continuing NHS healthcare in Wales

Continuing NHS healthcare: The National Framework for Implementation in Wales sets out the criteria under which the NHS should fund your care and outlines the principles and processes that need to be followed when deciding whether you have a primary health need and therefore eligible for continuing NHS healthcare. It also makes provisions for joint packages of health and social care in relevant circumstances.

Your healthcare needs and social care needs

There is no clear definition between what constitutes a social care need and what constitutes a health care need. In general terms, a health care need is focused on the treatment, control or prevention of an illness or disability and the care or aftercare of the individual with these needs. Whereas a social care need is more related to the practical support required for daily living, provision of meals, home adaptations, social interaction, recreational and cultural activities which enhance one’s independence. 

You could get joint funding from the NHS and your local authority if you have social care needs as well as healthcare needs. Social care packages are funded by the local authorities. Adult social services and health bodies could work together using pooled budgets and joint commissioning of services to address both your healthcare needs and social care needs.

Accessing continuing healthcare CHC

If you are aged 18 or over, with complex, intense and unpredictable healthcare needs, you could qualify for NHS continuing healthcare. Clinical commissioning groups, known as CCGs (the NHS organizations that commission local health services), must assess you for NHS continuing healthcare if it seems that you may require it.

Where it is determined that the primary reason for you requiring care is health-based rather than social care needs based, you will be entitled to ongoing package of free healthcare that is fully funded by the NHS which you could get directly arranged by the NHS or you could receive it in the form of a Personal Health Budget PHB similar to the personal budget for social care.

Provision of NHS Continuing Healthcare

You could get NHS care in a variety of settings outside hospital, such as in your home, or in a registered care home or elsewhere in the community. It is free care outside of hospital that is arranged and funded by the NHS. This means that you will receive care and support to meet your assessed healthcare needs at no cost to you.

Assessing eligibility for NHS continuing healthcare

If you think you are eligible for continuing health care, you should speak to your General Practitioner, nurse, care manager, social worker or other health care professional.  Your eligibility for NHS continuing healthcare depends on your assessed needs, and not on any specific diagnosis or condition.

If your needs change then your eligibility for NHS continuing healthcare may also change. As per the National Framework for NHS continuing Healthcare and NHS-funded Nursing Care in England, the guidance advises that the assessment should be person-centred and understandable.

You should be fully involved in the assessment process and kept informed. Your carers and family members may also be involved where appropriate. Your views about your needs and support are fully considered.

The initial CHC assessment

For most people, CCG will consider a “Checklist Tool” which is an initial checklist assessment that is used to decide whether to refer you for a full continuing health care assessment, and it helps professional to work out whether your needs may be of a level or type that could entitle you to continuing healthcare from the National Health Service.  

The Checklist is not an indicator of whether the individual will receive continuing health care.  However, you should receive written confirmation from the Clinical Commissioning Group of the outcome of the Checklist Tool.  The Checklist tool primarily indicates whether you need a full further assessment called the Decision Support Tool.

Depending on the outcome of the checklist, you will either be informed 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.

The Checklist Tool, The Decision Support Tool and the Fast Track Pathway Tool for can all be accessed at the GOV UK website.

Emergency situations

While in normal circumstances, an initial checklist assessment is carried out on you to decide if you need a full assessment, you may be fast-tracked in emergency situations or if you are terminally ill.

If you need care urgently, there is a further tool that is utilised to determine whether you can access continuing health care funds called Fast Track Pathway Tool for NHS Continuing Healthcare. The Fast Track Pathway is used when a clinician views the individual has a rapidly deteriorating condition and the condition may be entering a terminal stage.

If the individual lacks capacity, other people may be involved in both the Checklist Tool and the Decision Support Tool.

Undertaking full Assessment

To determine your eligibility for CHC, a multidisciplinary full assessment must be conducted by the Clinical Commissioning Group CCG or by a "multi-disciplinary team" consisting of a minimum of two health or care professionals who are already involved in your care. This team may also include different health and social care professionals who have different roles related to your health and social care requirements. This is to identify whether you have social care needs that could be funded by the local authority, so it is crucial to build an overall picture of your health and social care needs, and in some cases more detailed specialist assessments may be required.

You should be informed who is coordinating your NHS continuing healthcare assessment and you should be involved at every stage. The overriding test for NHS continuing healthcare is whether your primary need is for healthcare.   

During the assessment process, the team will take account of your needs under the following headings:

  • behaviour
  • cognition (understanding)
  • communication
  • psychological/emotional needs
  • mobility
  • nutrition (food and drink)
  • continence
  • skin (including wounds and ulcers)
  • breathing
  • symptom control through drug therapies and medication
  • altered states of consciousness
  • other significant needs

These needs are then given a weighting marked "priority", "severe", "high", "moderate", "low" or "no needs".

The team of healthcare professionals will consider whether your needs are intense, unpredictable and complex medical needs and you require substantial on-going support requirements.

When deciding as to whether your primary need is for healthcare, the factors CCG considers are as follows: -

  • the nature of your needs, including the type of interventions and assistance you require,
  • the intensity, extent and severity of your needs, including the need for sustained care,
  • the complexity of your needs, looking at how your needs arise, whether they are stable or constant monitoring
  • the unpredictability of your needs by identifying the degree of the fluctuation of any needs and the level of risk if adequate and timely care is not provided

Making the decision

The decision about eligibility should generally be made within 28 days in line with the guidance.

You should be given a copy of the decision documents, along with clear reasons for the decision.

If it is decided that you have a primary need for healthcare, the NHS will be responsible for your health care needs. Your healthcare package would be funded by the NHS that is usually free at the point of delivery and will pay for your healthcare services whether it is in a care home, nursing home, residential care home or even the cost of your care in your own home or in the community.

Challenging CCG’s decision

You have the right to challenge the CCG’s decision if you have been refused NHS CHC while you still believe that your need is primarily a healthcare need. You should receive the decision notice in writing informing you of the process if you disagree with the CCG’s decision.

You may wish to take your complaint further at an NHS Independent Review Panel and get in touch with the Parliamentary and Health Service Ombudsman. You can try to get letters of support from your GP, hospital consultant or medical professionals who could highlight your healthcare needs.

NHS-funded nursing care FNC

If you don’t satisfy the criteria for fully funded NHS CHC but have been assessed as needing care from a registered care, you could receive NHS-funded nursing care. You could still be funded towards the cost of nursing care that you may receive from a registered nurse in a care home or nursing home.

NHS aftercare

Disabled people who have been detained in hospital and classed under certain sections of the Mental Health Act receive their aftercare services free of charge.

Personal Health Budgets PHB: Your Right

From 1 April 2014, you have the right to ask for your continuing health care funds as a Personal Health Budget that enables you to make decisions about how you spent your budget in agreement with your local NHS team. People who are already receiving NHS Continuing Care have a right to ask for a personal health budgets. The standing rules to the NHS outline that individuals found eligible for CHC have a “right to have” a personal health budget. All CCGs should be offering personal health budgets to this group of people.

Personal Health Budget allows you to manage your healthcare and support needs in a way that suits you similar to adult social care personal budget which enables you to manage your social care needs.

The guidance written to explain the right can be found here:

www.england.nhs.uk/healthbudgets/wp-content/uploads/sites/26/2015/04/right-to-have-phb-guid.pdf

The Department of Health guidance mentions that ‘[health trusts] should commission services using models that maximise personalisation and individual control and that reflect the individual’s preferences as far as possible.’  - The National Framework for NHS Continuing Healthcare & NHS-funded Nursing care, para 169.

Personal Health Budget: Empowering disabled people

Personal Health Budgets empower disabled people with long term conditions to have greater choice, flexibility and control over the health care and support they receive. A personal health budget is an amount of money to support a person's identified health and wellbeing needs, planned and agreed between the person (or representative) and their local NHS team.

You should be asked if you prefer personal health budgets rather than having your needs directly met by the NHS team via CHC. You can choose not to have personal health budget if you do not wish to manage your care (directly or with support) in this way. To apply for personal health budgets, you will need to get in touch with your local NHS team, i.e. GP/Care manager.

Personalizing your health care package

You could explore receiving CHC in the form of personal health budget PHB that grants more flexibility and control over purchasing services to meet your needs. PHB should work according to your needs. Having PHB allows you to have the choice in utilizing your budget in a more personalized way that meets your health care and support needs. You have more control and you can make decisions over your personalized care package. How a personal health budget is delivered must be agreed between the individual and the CCG on a case by case basis. 

To have a personal health budget, you should:-

  • know upfront how much money you have available for healthcare and support,
  • be enabled to choose the health and wellbeing outcomes you want to achieve, in dialogue with one or more healthcare professionals,
  • be involved in the design of your care and support plan,
  • be able to request a particular model of budget that best suits the amount of choice and control with which you feel comfortable,
  • be able to spend the money in ways and at times that best suit you, as agreed in care and support plan.

Your care and support plan

If you are offered Personal Health Budget, you will be requested to design a support plan which will need to be agreed with the health care professional you are working with. You should have a care and support plan in which you identify your health and wellbeing goals.

You should expect your plan to be reviewed on a regular basis to take account of changes in your health needs. This care and support plan enables you to determine how you will spend your budget to stay healthy and safe and to achieve your goals. You will be able to use your budget to purchase (for example) a range of therapies, personal care or equipment.  You cannot use it to buy emergency care or primary care services, for example dental treatment or seeing a GP.

Different ways to receive PHB

You can choose to have your personal health budget managed in a range of ways to suit you including:

  • Notional budget:  No money changes hands. You find out how much money is available and talk to your local NHS team about the different ways to spend that money on meeting your needs. They will then arrange the agreed care and support.
  • Real budget held by a third party: A different organisation or trust holds the money for you and helps you decide what you need. After you have agreed this with your local NHS team, the organisation then buys the care and support you have chosen.
  • Direct payment for healthcare: You get the cash directly to purchase the care and support you and your local NHS team decide you need.

You need to show what you have spent the budget on, but you, or your representative, buy and manage services yourself. If you select this option, you should open a separate bank account to receive your personal health budget. This same account could also be used for receiving direct payments from social services.

CCGs need to follow the Direct Payments in Healthcare regulation and associated guidance which sets out the legal “must do’s” for putting in place direct payments and suggested good practice for their delivery. Links to the regulations and guidance are below.

Regulations: www.legislation.gov.uk/uksi/2013/1617/pdfs/uksi_20131617_en.pdf

Guidance:

www.england.nhs.uk/healthbudgets/wp-content/uploads/sites/26/2015/04/guid-dirct-paymnt.pdf                                         

Personal Wheelchair Budgets

If you are disabled and need a wheelchair, you can apply for Personal Wheelchair Budgets (PWB). PWB is funded by the NHS to give you greater choice and flexibility in choosing the most appropriate wheelchair for your needs. It is a scheme replacing the Wheelchair Voucher Scheme. The PWB lasts for 5 years or longer unless there is a significant change in your clinical condition. The Wheelchair Service still needs to approve your choice of wheelchair before you buy it.

Assessment for Wheelchair

You should request an assessment which is conducted by the wheelchair therapist or clinician. You can ask your GP or healthcare professional to refer you the wheelchair service if you don’t currently have a wheelchair. If you are already in touch with the Wheelchair Service, then you can just make a self-referral and request them to re-assess you to apply for Personal Wheelchair Budgets.

Personal Wheelchair Support Plan

The wheelchair service will identify your wheelchair needs by involving you to think about the important features you need in a wheelchair for example special seating,  pressure relief cushion and the type of joystick you may require. A personal Wheelchair Support Plan should be drafted and completed by yourself with the assessor in order to assist you to choose the most suitable wheelchair for your needs and specification.

Buying Wheelchairs using the PWB scheme

Following your assessment with the Wheelchair Service, you have six months to redeem the budget against your chosen wheelchair. You cannot purchase second-hand wheelchairs or scooters using this scheme but some exceptions may apply in certain circumstances.

Where can I get more help or information?

This factsheet is a basic overview of Personalisation – Personal Health Budgets . We have other publications concerned with independent living in our shop at www.disabilityrightsuk.org/shop

You can also place orders by contacting Disability Rights UK.

For further help and information please contact our Advice Line - 0330 995 0404.

You can get more information about where to get personal advice from our Factsheet F15 - Getting advice. All our factsheets are free to download on our website at disabilityrightsuk.org. We have a number of independent living factsheets.

To find out more about an organization in your local area that is run and controlled by disabled people check out Disability Rights UK membership on disabilityrightsuk.org

Organizations run and controlled by disabled people in your area may be able to support you to have more choice and control in your life and support your journey to independent living.  Further information is available to secure independent living through disabilityrightsuk.org/how-we-can-help/independent-living

10 July 2017

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