Living with pulmonary hypertension can be challenging, and it’s not made any easier by money worries. If your child has PH, or you are a young person with PH, welfare benefits and other support could be available to help you manage financially.

This support isn’t paid automatically so it’s important to find out what you could be eligible for and make a claim. This guide from the charity Turn2us, who work in partnership with PHA UK, takes you through what support could be available, and how to access it.

Welfare benefits

There is a range of welfare benefits available to people living with an illness or disability. Which benefits and how much you can get depends on your circumstances.  You can use the free Turn2us Benefits Calculator at phauk.org to check which welfare benefits and other support you may be entitled to in your situation. It is important to claim your entitlements because they can help you access other benefits and other forms of support.

Disability Living Allowance

Disability Living Allowance (DLA) is money for disabled children under 16 who have additional care needs – for example they need more help with washing, dressing and personal care than other children of their age, or mobility needs – they need more help or supervision moving around than other children of their age. If your child is over 16, has a disability and is not currently claiming DLA, they may be able to claim Personal Independence Payment (PIP) instead.

DLA is made up of a care component and a mobility component and depending on your child’s needs, they may qualify for one part or both. The care component is paid at three different weekly rates depending on how much care is needed – the higher rate is £82.30, the middle rate is £55.10 and the lower rate is £21.80. The mobility component is paid at two weekly rates, the higher being £57.45 and the lower being £21.80.

DLA is a non means-tested benefit which means it does not matter what savings or income you have. The decision to award it will be based on how your child’s condition impacts on their day to day life. If your child starts to receive DLA, you may become eligible for other benefits, for example Carer’s Allowance. You may also get extra in benefits such as Housing Benefit and Child Tax Credit.

Personal Independence Payment

If you’re over 16 and have difficulty or need help to look after yourself and/or to get around because of your PH, you may be able to claim Personal Independence Payment (PIP).  PIP is available in England, Scotland and Wales. If you live in Northern Ireland, you may claim Disability Living Allowance (DLA) instead.

PIP has two parts – a daily living component and a mobility component. Each component has two rates of payment, a standard rate and an enhanced rate. Which components you get and which rates they are paid depend on how you score in the medical assessment. In the medical assessment, a healthcare professional assesses your ability to do daily living activities like cooking, eating, taking medication, washing and dressing and your ability to get around outdoors. Points are awarded based on how difficult you find each activity. These points determine how much you might receive.

As well as scoring points, at the time of the claim, you will need to have had the same (or more) difficulties or needs for the past three months, and expect to have the same (or more) difficulties or needs for the next nine months. An exception to this if you are transferring on to PIP from DLA.

Most awards of PIP are for fixed periods. When your award expires, you will have to re-apply and be assessed again, in case your needs have increased or decreased over time.

Employment and Support Allowance

If you are unable to work because of sickness or disability and you do not get Statutory Sick Pay, you may be able to claim Employment and Support Allowance (ESA). You cannot usually receive ESA if you are in relevant education or you are a full-time student, however you may claim whilst studying if you receive DLA or PIP.

You must have “limited capability for work” to get ESA.  You will be asked to attend a medical assessment where a healthcare professional assesses your capabilities. It is important that you attend the medical assessment and keep submitting your sick notes (often called fit notes or Statements of Fitness for Work) to keep your claim in payment.

There are two types of ESA. Contributory ESA is available to people who have paid enough national insurance contributions within a certain time. The amount you get is just for you and it doesn’t depend on your income. Income-related ESA is available to people whose household income and savings are low enough.  The amount you get is for you and your partner (if you have one) and depends on how much income and savings you both have.  Some people get both types of ESA, for example because they are a couple but only one of them has paid enough National Insurance to get Contributory ESA. The rates of ESA depend on your age, whether you live with a partner and how you score in the limited capability for work assessment.

Benefits for students 

If you are aged under 20 and in full-time relevant education, you cannot usually claim benefits.  Relevant education includes full-time courses such as AS and A levels, NVQ and SVQ level 3 and below, BTEC.  However, if you are receiving DLA or PIP, are a parent or you live away from your family, you might be entitled to some benefits. 

If you are in full-time advanced education, you cannot usually claim benefits.  Advanced education includes degree or postgraduate courses, courses above A level or advanced GNVQs.  However, if you are a lone parent, you care for a disabled person or you are under 21 and live away from your family, you could be entitled to some benefits.  Income from a student grant or loan can  affect your welfare benefit entitlements.

If you are studying part-time, you could be entitled to some benefits. The rules around benefits for students can be complicated, so you should seek advice from a local adviser – you can find one in your area using advicefinder.turn2us.org.uk. There is also further information about benefits for students at turn2us.org.uk/Your-Situation.

Charity grants

If you’re struggling financially, it’s also worth checking if you may be eligible for help from a grant-giving charity.

The free Turn2us Grants Search, available at phauk.org, features over 3,000 charitable funds that give grants and other support to individuals in various different circumstances. The Grants Search also includes details of each fund’s eligibility criteria and how to apply.

There are funds available to help people in financial hardship, people who have specific illnesses or disabilities.

Grants may be able to help with bills and other living expenses, education costs, or for one-off essential items.