Benefits Information for Patients and Carers (2024)

Contents

Introduction
Statutory Sick Pay
What is Universal Credit
Employment Support Allowance (ESA)
Personal Independent Payment (PIP)
Disability Living Allowance
Attendance Allowance
Priority Services Register
Carers Allowance
Housing Benefit
Council Tax Reduction
Disabled Band Reduction Scheme
NHS Low Income Scheme
Medical exemption certificates
Blue Badge Scheme
Travel Costs
Reimbursem*nt Toolkit for Home Dialysis
Water Sure
Grants
Turn2Us
Your local Kidney Patient Association
Other charitable organisations

Introduction

When you are diagnosed with kidney failure, you may be concerned about your ability to work. Everyone’s situation is different, and there is no right or wrong course of action. Some people continue with exactly the same work. Some change their role or their working hours. Others train for a different job. Some people give up work altogether, either temporarily or permanently.

At different points in your life, your circ*mstances will change and different issues will come up in relation to your health and your employment. However, there is no specific reason why a person with kidney failure should not be able to continue working or gain suitable employment, provided they feel physically well enough. Working can have positive effects on both your physical and psychological well-being. If you are unable to carry on working the first section below explains what you may be entitled to.

Statutory Sick pay

You may qualify for basic Statutory Sick Pay (SSP) if you are too ill to work. It’s usually paid by your employer for up to 28 weeks. You cannot get less than the Statutory amount. You can get more if your company gives you a contractual right to Occupational Sick Pay (OSP) – check your employment contract. If you are not eligible for SSP or it has ended you may be able to apply for – Universal Credit or Employment and Support Allowance (ESA).

What is Universal Credit

Universal Credit is a payment to help with your living costs. It’s usually paid monthly or twice a month for some people in Scotland. You may be able to get it if you are on low income, out of work or you cannot work. You will usually only be able to claim Universal Credit if you aged 18 and over, but some people aged 16 or 17 can get it depending on their circ*mstances.
Universal Credit Eligibility https://www.gov.uk/universal-credit/eligibility

Universal Credit How to Claim https://www.gov.uk/universal-credit/how-to-claim

Universal Credit Helpline

Telephone 0800 3285644

Welsh language 0800 3281744

Relay UK (If you cannot hear or speak on the phone) 18001 then 0800 3285644 https://www.relayuk.bt.com/

British Sign Language (BSL) https://connect.interpreterslive.co.uk/vrs?ilc=DWP

Textphone 0800 3281344

Monday to Friday 8am to 6pm

Employment Support Allowance (ESA)

ESA provides help with costs if you unable to work and support to get back into work if you are able.

Who qualifies for ESA

You can qualify for “new style” Employment Support Allowance (ESA) If you are under state pension age and you have a disability or a health condition that affects how much you can work. You also need to have both: worked as an employee or have been self-employed AND Paid sufficient National Insurance Contributions – usually in the last 2 to 3 years. You may be able to claim New Style Employment and support allowance with, or instead of Universal Credit.

For further information about ESA visit https://www.gov.uk/guidance/new-style-employment-and-support-allowance

Personal Independent Payment (PIP)

What PIP is for

Personal Independent Payment (PIP) can help with extra living costs if you have both:
A long-term physical or mental health condition or disability.
Difficulty doing certain everyday tasks or getting around because of your condition.

You can get PIP even if you are working, have savings or are getting most other benefits.

1 A daily living part – if you need help with everyday tasks

2 A mobility part – if you need help with getting around

Whether you get one or both parts and how much you get depends on how difficult you find everyday tasks and getting around.

Daily living part

You might get the daily living part of PIP if you need help with:

• Eating, drinking
• Preparing food
• Washing, bathing
• Using the toilet
• Dressing and undressing
• Reading
• Communicating
• Managing your medicines or treatment
• Making decisions about money
• Socialising and being round other people

Mobility part

You might get the mobility part of PIP if you need help with:

• Planning and following a familiar/unfamiliar journey
• Physically moving around

You do not have to have a physical disability to get the mobility part. You might also be eligible if you have difficulty getting around because of a cognitive or mental health condition, like anxiety.

For further information about PIP visit https://www.gov.uk/pip

Evidence to gather before P.I.P. application

It can take a considerable time to gather evidence to put with your claim for P.I.P. Do not delay making a claim. It will make it easier for you to gather evidence if you have a clear understanding of the questions and points scoring system used. Your area advocate can talk to you about this. It is important to remember the assessments concentrates on how your health condition affects your day to day living and not on the health condition itself.

Suitable evidence can include:

Letters from hospitals, GP’s or specialists (not appointment letters)

X ray, scan or ultrasound results

Copy of prescription (remembering dialysis is prescribed)

Certificate of visual impairment

Occupational therapy report

Support letter from your advocate at Kidney Care UK

Carer or social worker report

Psychology report

Family member letter of support

Photographic evidence of PD stock or home haemodialysis set up

Who to ask:

Nephrologist at renal clinic

Other specialist consultant

GP

Occupational therapist

Social worker

Advocate

Specialist nurse

Counsellor

It is advisable that evidence is sent direct to patient that way you can check that you are happy with it and decide if you want to include it in your evidence.

Keep photocopies of all evidence.

It may be an idea to keep a diary to add to evidence to show how your disability affects you on a day-to-day basis.

Disability Living Allowance

If your child is under 16 and you live in England or Wales you can apply for DLA.

If you live in Scotland you can apply for Child Disability Payment.

DLA isn’t just for children who are physically disabled. It can be given for a wide range of medical conditions including behavioral and mental health conditions as well as learning disabilities and development delay. You might be able to claim even if you wouldn’t describe your child as “disabled”

You can get DLA if at least one of the following applies to your child:

• They need a lot more care, attention or supervision than a child of the same age who isn’t disabled.
• Need someone with them whilst on dialysis.
• They have difficulty walking or getting around outdoors compared to a child of the same age who isn’t disabled.

Your child must have been disabled or had the condition or had the condition for at least 3 months, and you must expect it to last for 6 or more. You don’t need as formal diagnosis from a doctor to apply, but this can usually help.

DLA is made up of 2 components (parts), the ‘care component’ and the ‘mobility component’. To get DLA you must be eligible for at least one of the components.

More information about Pip:https://www.gov.uk/disability-living-allowance-children

Attendance Allowance

Attendance Allowance helps pay for your personal care if you’ve reached State Pension age and are disabled rates, eligibility, apply, claim form AA1 Forms https://www.gov.uk/government/publications/attendance-allowance-claim-form

Attendance Allowance is paid weekly at 2 different rates – the one you get depends on the level of help you need.

Attendance Allowance is not means tested – what you earn or how much have in savings will not affect what you get.

How to claimhttps://www.gov.uk/attendance-allowance/how-to-claim

Attendance Allowance Overview https://www.gov.uk/attendance-allowance

Contact DWP about Attendance Allowance

Call 0800 731 0122 (text phone 0800 731 0317

Priority Services Register

The National Kidney Federation would like to encourage all kidney patients to contact the Priority Services Register (PRS) if they aren’t already registered. Please ensure you register with both your energy and water providers as they maintain separate PRS registers. This is to ensure that kidney patients needs can be supported if any specific power outages are introduced.

For more information on what the PRS Register does and how to register please visit: https://www.ofgem.gov.uk/get-help-your-supplier-priority-services-register

Carers Allowance

Carer’s Allowance is a benefit for people who are giving regular and substantial care to disabled people. Carer’s Allowance is a taxable benefit and forms part of your taxable income.

You can usually get Carer’s Allowance if all of the following apply:

• you're aged 16 or over
• you're not in full time education
• you spend at least 35 hours a week caring for a disabled person
• you don't earn more than £132 a week from employment or self-employment – after deductions such as income tax, National Insurance and half of your pension contributions
• you're not subject to immigration control that would stop you getting benefits

The person you're caring for must get one of the following benefits, called 'qualifying benefits':

• Attendance Allowance
• Constant Attendance Allowance
• the care component of Disability Living Allowance at the middle or highest rate
• the daily living component of Personal Independence Payment (either rate)
• Armed Forces Independence Payment

If you get other benefits

You’ll get no Carer’s Allowance or less if you get some other benefits including:

• state retirement pension
• contributory ESA
• contribution-based JSA
• Maternity Allowance

If your Carer's Allowance is either the same as or less than the other benefit, you will get the other benefit rather than Carer's Allowance.

If the other benefit is less than your Carer's Allowance, you will get the other benefit and the balance of your Carer's Allowance on top.

The rules about this are complicated - you canget help from your nearest Citizens Adviceto check you’re getting what you should.

If you're not eligible for Carer's Allowance

If you care for a person or people for at least 20 hours a week, you might be able to get Carer's Credits. These are credits that fill in gaps in your National Insurance record - this decides whether you can get:

• State Pension
• contributory Employment and Support Allowance (ESA)
• contribution-based Jobseeker’s Allowance (JSA)

You can't make a claim by phone.

use the online Claim Carer's Allowance serviceon GOV.UK.

download and print a Carer's Allowance claim form, fill it in and send it by post.

If you need help making your claim, contact the Carer's Allowance Unit.

Carer's Allowance Unit

Telephone:0800 731 0297

Pension Credit

Pension Credit gives you extra money to help with your living costs if you’re over State Pension age and on a low income. Pension Credit can also help with housing costs such as ground rent or service charges.

Pension Credit is separate from your State Pension.

You can find more information at https://www.gov.uk/pension-credit

To apply telephone: 0800 99 1234

Housing Benefit

Eligibility

Housing Benefit can help you pay your rent if you’re unemployed, on a low income or claiming benefits. It’s being replaced by Universal Credit.

You can only make a new claim for Housing Benefit if either of the following apply:

• you have reachedState Pension age
• you’re in supported, sheltered or temporary housing

Bedroom Tax

If you have a spare bedroom and you’re renting a council or housing association property, your Housing Benefit, or housing costs element of Universal Credit, might be reduced. This is often referred to as the ‘Bedroom Tax’ – or the ‘under-occupation penalty’ or ‘removal of the spare room subsidy’.

Exemptions for disabled people

• If you or your partner receive regular overnight care from a carer, or team of carers, you’re allowed an additional bedroom.
• An extra bedroom is allowed for a severely disabled child who is getting either the middle or higher rate of either component of Disability Living Allowance, and is unable to share a room because of their disability.

Discretionary Housing Payments

(DHPs) provide financial support to help with rent or housing costs.

Eligibility

You can apply for aDHPif you currently get either:

• Housing Benefit
• thehousing element of Universal Creditand need more financial support with housing costs

What aDHPcan cover

DHPfunding is available in England and Wales. Find out how toapply for a Discretionary Housing Payment in Scotland.

DHPfunding in England and Wales can help people with housing costs, including those affected by:

• the benefit cap
• removal of the spare room subsidy in the social rented sector
• Local Housing Allowance (LHA) rates

You may get aDHPto cover housing costs for:

• a rent shortfall
• rent deposits
• rent in advance if you need to move home

Apply through your local council

Each council decides how their application process will work.

Your council will look at your circ*mstances to see whether you are eligible for aDHP. They will decide:

• whether to give you aDHP
• how much you will be paidhow long you will receive the payment

Council Tax Reduction

Apply to your local council for Council Tax Reduction (sometimes called Council Tax Support).

You’ll get a discount on your bill if you’re eligible.

You might be able to apply for a Council Tax discount or exemption if you or someone you live with is disabled.

Disabled Band Reduction Scheme

You may be eligible for the scheme if you live in a larger property than you would need if you or another occupant were not disabled.

If you qualify, your bill will be reduced to the next lowest Council Tax band. For example, if your property is in Band D, you’ll pay the Band C rate. If your home is already in the lowest band (Band A), you’ll get a 17% discount on your Council Tax bill instead this benefit can be back dated.

You’ll have to show that you have either:

• an extra bathroom, kitchen or other room that you need for the disabled person, this could be a DIALYSIS room if you dialyse at home.
• extra space inside the property for using a wheelchair

NHS Low Income Scheme

If you have a low income, the NHS Low Income Scheme could help you pay for:

• NHS prescription charges
• NHS dental treatment charges
• the cost of sight tests, glasses and contact lenses
• the cost of travelling to receive NHS treatment
• NHS wigs and fabric supports (check with your hospital for their arrangements for supplying NHS wigs)

How much help you get depends onyour weekly incomeand necessary outgoings, plus any savings or investments you have at the time you apply.If the amount you have left is low, youmay be able toget helpthrough the NHS Low Income Scheme. Any help you’re entitled to is also available to your partner, if you have one.

If you have already paid for treatment, you can apply for a refund at the same time as you apply for the scheme.

If you live in England:

You can download and printa HC1 form (PDF: 452KB)ororder an HC1 form online. It will be posted to you.

If you live in Scotland:

You can download and printan HC1 form (PDF: 124KB), or you can get anHC1 form from Jobcentres, GP practices, pharmacies and Citizens Advice.

If you live in Wales:

You can download anHC1 from theWelsh Government website.

You can also call0345 603 1108 and select the option for health publicationsto get a copy sent to you.

You may also be able to get an HC1 fromJobcentres, NHS hospitals, dentists and opticians.

If you need any help making your claim,call 0300 330 1343.

Medical exemption certificates

A medical exemption certificate FP92Aentitles youto free NHS prescriptions.

You're entitled to amedical exemption certificate if you have either:

• a permanent fistula (for example, caecostomy, colostomy, laryngostomy or ileostomy) which needs continuous surgical dressing or an appliance
• a form of hypoadrenalism (for example, Addison’s Disease) for which specific substitution therapy is essential
• diabetes insipidus and other forms of hypopituitarism
• diabetes mellitus, except where treatment is by diet alone
• hypoparathyroidism
• myasthenia gravis
• myxoedema (that is, hypothyroidism which needs thyroid hormone replacement)
• epilepsy which needs continuous anticonvulsive therapy
• a continuing physical disability which means you cannot go out without the help of another person
• cancer and are undergoing treatment for either:
• cancer
• the effects of cancer
• the effects of cancer treatment

These are the only conditions that entitle you to a medical exemption certificate. If you’re not sure about the name of your condition, speak to your doctor.

If you're entitled to a certificate because of your medical condition, speak to your GP or doctor. They'll give you an application form.

You'll get a paper certificate in the post within 10 working days of them receiving your application.

Blue Badge Scheme

The Blue Badge scheme helps you park closer to your destination if you’re disabled. A Blue Badge costs up to £10 in England and £20 in Scotland. Its free in Wales. They usually last up to 3 years.

Go to your local council’s website for information about the scheme.

Travel Costs

You may be able to claim reimbursem*nt for driving yourself to dialysis or taking a taxi or public transport. You may also be eligible for free parking at dialysis. In the first few weeks after a transplant patient should also be able to claim transport costs.

All patients registered with a GP in England who are receiving in-centre haemodialysis should be offered transport support. This offer applies to journeys to or from in-centre haemodialysis and newly transplanted patients on follow up clinic appointments

As such, systems should implement flexible mechanisms that offer transport support to:
a) Patients (including friends or family) who are able to travel independently but require reimbursem*nt or a form of expense payment. This includes:
i. patients who are eligible for the HTCS
ii. patients who require upfront financial support
iii. patients who are happy to be reimbursed
b) Patients who have a need to travel by NEPTS

The rate of reimbursem*nt is still under discussion and is up to individual hospital trusts

Reimbursem*nt Toolkit for Home Dialysis -UPDATED 02/2023

The NKF alongside other kidney charities and professional bodies have been working with the UKKA Kidney Patient Safety Committee.

Water Sure

Water Sure is a scheme which helps some people with their water bills. To apply for the scheme, you must be on benefits and need to use a lot of water either for medical reasons or because your household has a certain number of school-age children. You also need to be on a water meter or be waiting to have one installed.

If you get help through the Water Sure scheme, your water bill will be capped. This means you will not pay any more than the average metered bill for the area your water company deals with.

In some cases, your normal metered water bill could be less than your company's Water.

Sure cap. If this applies to you, you will only be billed for the amount of water you use.

You can ask your water company what their cap is if you want to check this before applying.

To qualify for Water Sure you need to:

• be on awater meteror have applied for one and be waiting for it to be installed, or be paying an assessed charge because it's not possible to fit a meter at your property
• be on certainbenefits
• have ahigh essential use of water

Some water suppliers also offer Water Sure if you're on Disability Living Allowance or Personal Independence Payments. You should check with your water company if you're not sure if they cover these benefits.

Renal patients requiring haemodialysis at home will not qualify for Water Sure if they are already getting a contribution to their water costs from the NHS. Contact your Water Supplier.

Grants

Disabled Facilities Grant

You could get a grant from your council if you’re disabled and need to make changes to your home. For example, if you:

• are physically disabled

• have age-related needs
• have a terminal illness

You might need to

• widen doors and install ramps or grab rails
• improve access to rooms and facilities, for example with a stairlift, or level access shower
• improve access to your garden
• build an extension, for example a downstairs bedroom
• provide a heating system suitable for your needs
• adapt heating or lighting controls to make them easier to use

A Disabled Facilities Grant won’t affect any benefits you get.
This benefit is means tested

To apply contact your local Council

Turn2Us

Helps people in financial need to gain access to benefits, charitable grants and other financial help. Includes a grant search database and a benefits calculator.

Call 0808 802 2000

www.turn2us.org.uk.

Your local Kidney Patient Association

There are Kidney Patient Associations all around the Country who may be in a position to offer help to kidney patients at local level. To find your local KPA telephone the NKF Helpline on 0800 169 0936

Other charitable organisations

Family Fund is the UK’s largest charity providing grants for families raising disabled or seriously ill children and young people

Tel 01904 550055

Kidney Care UK

May be able to offer help for holidays, white goods or hardship grants

Tel 01420 541424

Your local Council adult care or children’s care or renal social worker may have information about grant providers in your local area.

The National Kidney Federation have collated a variety of financial support and benefits advice. With the cost-of-living crisis hitting everyone hard in the UK right now, costs of energy bills and the overall costs going up, we have put together some information and guidance on what patients and their carers may be eligible to claim from the government and other sources.

You can read this information by clicking here https://www.kidney.org.uk/help-with-financial-support

Useful links / Websites

www.advicenow.org.uk

https://www.carersuk.org/help-and-advice/ 0800 808 7777 9-6 Mon-Fri

https://www.disabilityrightsuk.org/links-organisations-giving-advice-benefits-care-and-debt

0330 995 0400

https://www.adviceni.net/Northern Ireland 0800 915 4604

https://advicelocal.uk/

https://www.citizensadvice.org.uk/England 0800 144 8848 | Wales 0800 702 2020 9-5 Mon-Fri

https://www.ageuk.org.uk/0800 169 6565 8am-7pm