Serious illness or disability may make work difficult or even impossible. Disabled people may also face discrimination at work. Some people had had to give up work. They did not say that having a catheter was the main reason for giving up work. It was lack of co-ordination, pain, bladder problems, repeated infections, numerous operations, weakness or partial paralysis that had led to retirement. But some of the infections that people mentioned had resulted from living with a catheter. Carol gave up work at 39 because of endometriosis.
Stewart (with prostate problems) had already retired from work, but thought that it would be difficult to teach with a catheter; the staff toilets were far from his workshop and rooms.
Others had either continued working, had returned to work after a spell in hospital, or had taken up voluntary work. Iain, with multiple sclerosis (MS), is an IT officer. He continued full time work; his MS had made him more determined not to miss work. Gavin, who had broken his neck and was partially paralysed, said that his bowel and catheter routines made a return to work daunting. He also worried that he might have an ‘accident’ and not be able to find someone to help him clean up. He got the equipment he needed after getting advice from ‘Access to Work’ (see below). After his injury, Gavin did lighter work because he could no longer be a fire fighter. Later, when jobs were cut he was made redundant.
Badg went back to work a few months after leaving hospital. ‘Access to Work’ paid to adapt the toilet at work for him. ‘Access to Work’ helps people if their health or disability affects the way they do their job. It advises an employer and helps with costs arising from people’s needs. ‘Access to Work’ might pay towards a support worker or the equipment people need at work. It can also contribute to the cost of getting to work if someone cannot use public transport. For details see: GOV.UK.
Michelle has been partially paralysed since the age of 16. Using a catheter enabled her to go to university and then qualify as a solicitor. The catheter allows her to work.
Some people developed new interests or projects linked to their condition or disability. Peter, for example, who once ran his own business, now manages a website called 21st Century Catheter Project, which aims to improve the design of the Foley catheter and to help current users. He receives a small monthly income for managing the website.
Annie does voluntary work. She had a horse riding accident in 2002 when she was 54. She was partly paralysed. She first used a urethral catheter, now a suprapubic one. She said that in many ways she has become busier since the accident. She became High Sheriff for a year and is now a trustee of the Southern Spinal Injury Trust. Several other people also talked about the voluntary work they’d become involved in connected with their specific condition, e.g. endometriosis, multiple sclerosis. Alok worked with computers before his spinal injury.
As discussed above, people who are ill or disabled may have to give up work. Without an income they may have serious financial difficulties. For the latest on Government benefits and grants see GOV.UK.
Finding information about the benefits that might be available in each situation can sometimes be difficult. Gavin, who was paralysed from his chest down in 2010 after he slipped on wet decking, said that it was a ‘nightmare’.
Sara, with multiple sclerosis, received Disability Living Allowance. This had two parts – the care component and the mobility component. Sara received both because she is wheelchair bound. This benefit has now been replaced by Personal Independence Payments (PIP) which also has two partsShe also gets Incapacity Benefit (now replaced with Employment and Support Allowance ESA). Rob, with weak legs through cauda equina syndrome, receives Attendance Allowance at the lower rate.
Frances, with multiple sclerosis, pointed out that when people are applying for benefits they should fill in the forms as though they were having a bad day, not a good day; many people find it hard to admit to needing help with some aspects of social care, such as incontinence. To start with Frances had difficulty getting benefits because she was self-employed.
People with a complex medical condition, substantial and on-going care needs, and who are not in hospital, may be eligible for free NHS Continuing Healthcare. If someone in a care home gets NHS Continuing Healthcare, it will cover their care home fees, including the cost of accommodation, personal care and healthcare costs. If NHS Continuing Healthcare is provided in the home, it covers personal care and healthcare costs. It may also include support for the carer. Clinical Commissioning Groups CCGs (who manage local health services) carry out an assessment for NHS Continuing Healthcare if it seems that someone may need it. Not everyone with a disability or long-term condition is eligible.
If a person doesn’t qualify for NHS Continuing Healthcare, their local authority is responsible for assessing their care needs and providing services if they are eligible. If the outcome of the assessment is that services will be provided, people can ask for Direct Payments instead of having the service arranged by social services. Direct Payments aim to give people more flexibility in how services are provided. By giving people the money instead of social care services, they have greater choice and control over their lives and can decide themselves how care is delivered. Several people with a spinal cord injury said that Direct Payments enabled them to employ their own professional carer, (see ‘Having a professional carer
People with certain medical conditions, those with a permanent fistula or stoma that may need continuous surgical dressing, or anyone requiring an appliance such as a catheter, can get free NHS prescriptions. They need to get a valid Medical Exemption Certificate (see ‘Getting catheter equipment
’). A fistula is an abnormal connection between an organ, vessel or intestine and another structure. Fistulas are usually the result of injury or surgery. A stoma is an opening, either natural or surgically created, which connects a portion of the body cavity to the outside environment (e.g. a colostomy).