7 April 2015
An estimated 100,000 people living with cancer in Scotland are struggling to cope with basic day to day tasks like washing and leaving the house.
New research from Macmillan Cancer Support reveals for the first time, that 76% of those who’ve had a cancer diagnosis in the last 10- years – an estimated 100,000 people, have practical or personal care needs.
These range from difficulties getting dressed and bathing, to problems getting to hospital appointments and looking after their dependants such as children or an elderly parent.
The new report, ‘Hidden at Home - the social care needs of people with cancer’ found:
- 48% - over 60,000 people -are either unable to do practical tasks such as prepare and eat food, or do grocery shopping or housework by themselves
- almost half (47%) of patients are either completely unable to get in and out of bed, move around or use transport alone
- 42% can’t travel to medical appointments or pick up prescriptions alone or without a lot of help
- Over 30,000 people (24%) are unable to carry out personal care routines such as bathing, dressing or going to the toilet by themselves
- Over a fifth (21%) of those with caring responsibilities for children or other relatives said they could no either longer carry them out at all or needed a lot of support.
- A massive 90% of patients with practical or personal care needs say their needs are either entirely, mostly or in part due to cancer and its impact.
- Over half (56%) of those surveyed had needs which could be classified as critical or substantial according to local authority guidelines.
The report also revealed that the biggest source of support for patients was their families and friends.
A massive 85% of those who needed practical or personal care support relied on family and friends for help, and for half of those in need of support this was their only source of help.
The survey also found that almost 20% of people with cancer with support needs got help from the NHS, while 30% got help from their local authority.
Unfortunately almost one in three (31%) people with cancer across the UK have practical or personal needs but do not get enough support or get no support at all.
The impact on those without enough support could be extremely damaging, with patients reporting deteriorating health and visits to A&E.
Macmillan’s head in Scotland, Janice Preston, said: ‘It’s heartbreaking to think that there are cancer patients struggling to feed or wash themselves who aren’t getting the support they desperately need.’
‘Cancer is often seen as a medical problem solved by surgery or drugs, but this research shows the problems it brings can no longer be solved within hospital walls.’
‘As people live longer with cancer, health and social care services must work much more closely together to make sure they are the care and support they desperately need.’
One woman who thinks patients must be offered more help is East Kilbride breast cancer patient Helen Thewliss, 65.
Helen said: ‘I had to rely a lot on my friends and family to help me clean the house and I lived on ready meals or frozen meals from my family because I was too tired to cook. I was made redundant and had to spend most of the money putting in a walk in shower because I couldn’t get into the bath. I had problems getting about on my own, I had financial problems and I had emotional problems.’
‘Someone did give me a number for a breast care nurse but I didn’t call to ask for help because I just felt that it would be ungrateful. My life had been saved and I felt like it was up to me now to just get on with things.’
‘I think because most people don’t realise how cancer affects people, when they go through it themselves, they wonder what’s wrong with them and why they can’t cope. It would be such a good idea if someone sat you down and asked what help you needed and pointed you in the right direction. And it would be so helpful if it was seen as normal to have problems after treatment and to know that asking for help is okay.’
Macmillan is calling for every cancer patient in Scotland to receive an assessment of their needs and a care plan that sets out how they’ll get all the support they need. The assessments are already being carried out in some parts of Scotland and the charity says they’re helping patients get the support they need. Macmillan is also urging the 32 new health and social care boards, being set up on 1 April, to make joined up care for cancer patients one of their top priorities.