Charitable grants
The statutory benefits, IIDB and lump-sum schemes do most of the heavy lifting after a mesothelioma diagnosis. The charitable sector fills the gaps the state doesn’t reach: a £350 one-off payment to clear an energy bill, a small grant towards a family holiday, a wheelchair the NHS can’t supply on the right timescale, a nurse on the end of a phone at 9pm. This chapter is a map of the main UK routes. Most of them are unfamiliar to most patients on day one; please don’t feel you should have known.
Mesothelioma UK. The national specialist charity for mesothelioma in the UK (Charity Commission no. 1118070). Three things to ask them for:
- The helpline.0800 169 2409, freephone, staffed by clinical nurse specialists. They will not push you in any direction; they will answer the questions you didn’t realise you could ask, and they will stay on the line as long as you need.
- Patient grants.Small one-off grants towards specific costs — energy bills, household equipment, family memory-making, travel to specialist appointments. The grants programme has a published application form and a small panel who decide. Ask the helpline how to apply; it is not a competition.
- Mesothelioma UK clinical nurse specialists in NHS posts. Mesothelioma UK funds specialist nurse posts in NHS hospitals around the UK; you may already have one of those nurses on your medical team without realising they are part-funded by the charity.
Macmillan Cancer Support. 0808 808 00 00, freephone, seven days a week. Three useful services:
- One-off Macmillan grants.Typically around £350, paid to the patient or family for specific costs — bedding, a fridge, heating, holiday costs, transport. Applied through a healthcare professional (your CNS, GP, social worker or district nurse) rather than directly by the patient.
- Macmillan benefits advisers.Free, expert advice on the full benefits picture — PIP, AA, UC, ESA, the lump-sum schemes — in person or by phone. Often the single fastest way to maximise household income after diagnosis.
- Macmillan information centres in many NHS trusts, with leaflets, quiet rooms, and somebody to talk to.
Marie Curie.0800 090 2309, freephone. Best known for the Marie Curie nurses who provide one-to-one care for people approaching the end of life at home, arranged through the patient’s GP or community palliative team. The Marie Curie information and support line is also a good source of advice on care choices, end-of-life planning, and bereavement support.
Local Asbestos Support Groups.The Asbestos Victims Support Groups’ Forum (AVSGF, asbestosforum.org.uk) lists the regional groups around the UK — Greater Manchester, Merseyside, Sheffield, Barrow, Clydeside, North-East, Cheshire, Hampshire and others. Most run free benefits and grants services; many run small hardship funds of their own and can pay quickly for small specific things (a taxi to hospital, a memory book, a fan in summer). They also know your local NHS mesothelioma team and which solicitor in the area runs honest claims.
Carers Trust.carers.org. Small grants for unpaid carers — a break, a washing machine, a course — administered through local Carers Trust Network Partners. Worth a look as soon as a partner or adult child becomes the main carer.
Charity-of-last-resort grants for utility bills.If the household is struggling with energy bills specifically, the energy supplier’s own hardship-fund trust is often the first port of call — British Gas Energy Trust, OVO Energy Fund, E.ON Next Energy Fund, EDF Energy Customer Support Fund, and others. They’re open to customers and (sometimes) non-customers, and the application is usually made with help from Citizens Advice or a Macmillan benefits adviser.
One useful principle.Discretionary charitable payments, including the Mesothelioma UK and Macmillan grants, don’t normally count as income for means-tested benefits like Universal Credit. So a small grant doesn’t cost you the UC element it’s meant to top up. If you’re ever told otherwise — rare, but happens — ring a benefits adviser before turning a grant down.
One last sentence.Asking for charitable help is not failure. The whole point of these funds is that they exist for situations exactly like yours, and they go unspent every year because patients and families don’t know they’re there. Please don’t leave them on the table.