Living with a long-term condition

What is a long-term condition?

A long-term condition is an illness that cannot be cured but can usually be controlled with medicines or other treatments. Examples of long-term conditions include arthritis, asthma, diabetes, epilepsy, angina, heart failure, and high blood pressure (hypertension).

Having a long-term condition can affect many areas of your life. These may include relationships, the ability to work, housing, education provision and finances. Often people diagnosed with a long-term condition may find it also impacts their thoughts and feelings.

Problems do not have to be faced alone. Many sources of support are available including your local doctor, hospital doctors, social and community services.

Accepting support

Sometimes, illness may force a change in an individual's usual role within their family. If they were the strong person everyone else relied on, it may be hard to accept that they are the one who now needs support. At the other extreme, family/carers may overestimate the amount of help they need, leading to unnecessary loss of independence. A couple of things can help; everyone should learn as much as possible about the condition. Getting the 'support network' involved will help them recognise when help is needed and when independence should be respected. Additionally, developing clear ways of communicating (without hurting anyone's feelings) about what is helpful, is important.

Research suggests that the people who do best are those who take responsibility for managing their own long-term condition in partnership with their doctors. Knowing what treatment options are available will give them the confidence to understand when to manage their condition ('self-care') and when to ask for help.

Managing your own condition is easier when you are involved in decisions about your treatment from the start. It might be necessary to remind health professionals that you have this right and that it is Department of Health policy. The local doctor, hospital specialists, voluntary organisations, the internet and the library may all be useful sources of information.

Self management UK (see below) offers self-management courses which provides tools and techniques. These help you to take control of your health and manage your condition better on a daily basis. It may be free, depending on where you live.

Personal health budgets were introduced by the NHS in April 2014. The budget is an amount of money to support your identified health and well-being needs. Personal health budgets may be available to people who are:

• Adults receiving NHS continuing healthcare (NHS-funded long-term health and personal care provided outside hospital).

• Children or young people receiving NHS continuing healthcare.

• People who are referred and meet the eligibility criteria of their local wheelchair service, or people who are already registered with the wheelchair service when they need a new wheelchair or specialist buggy. This might be either because of a change in clinical needs or the condition of the current chair. These people will be eligible for a personal wheelchair budget.

• People with a mental health condition who are eligible for section 117 after-care as a result of being detained under certain sections of the Mental Health Act (this does not include detention under section 2 of the Act).

You will need to agree a care plan with your local NHS team so decisions can be taken about how the money is to be spent. The idea of the personal health budget is that if you have a long-term condition you will have greater choice, flexibility and control over the healthcare and support you receive. The money will need to be kept in a bank account used only to purchase healthcare. You may also qualify for a separate budget to purchase social care.

Working with a long-term condition (if possible) has been shown to bring long-term benefits. It is best to make the employer aware of the condition and have a discussion to see whether changes are possible to meet any needs the condition creates. It is best to do this on a friendly and informal basis. If there is resistance, legislation such as the Equality Act 2010 may support a legal right to request such changes.

The changes required may include:

• Alterations to the workspace.

• Working different hours.

• Working in a way that makes allowances for the condition (for example, having more breaks).

• Equipment that may help.

• Going back to work on a part-time basis after being off sick.

• Making the job less stressful.

• Sharing work with others when under pressure.

After a period of sick leave it is sensible to have a discussion with a doctor about when it will be appropriate to go back to work. If necessary, the doctor can give you a 'fit note' advising of any changes they feel need to be made.

It may also be possible to get support from the occupational health service at work. If this is not possible, access to a national occupational service might be an option.

Sometimes a long-term condition might require changes to where you live. For example, structural changes to a bathroom, installing a chair lift or even moving to a single-storey property. There is a Disabled Facilities Grant that may help pay for these changes. Usually, the grant is only available for changes that have been recommended by an occupational health therapist. Additionally, some adaptations (such as accessible bathrooms) can be charged exempt of VAT where there is proof of long-term disability.

See also the 'Finance' section, below.

Children with long-term conditions have the same rights of admission to school as other children. The school should be aware of the child's condition so that the teachers can plan what support they will need and how to protect them from risk. Asthma, diabetes and epilepsy are typical long-term conditions of which the school needs to be made aware. Sometimes, the child may need to attend a school which specialises in providing the equipment and environment that meets their needs.

Issues you may need to discuss with the school include:

• Medicines that may be required during the school day and what side-effects they may cause.

• What emergencies might arise and how to deal with them.

• Any special requirements such as diet.

• Anything that needs to be done before physical activity (for example, have a puff of an asthma inhaler).

• What will happen if your child needs to attend medical appointments on school days.

Remember that schools are not obliged by law to give the child medicines but if staff agree to do so, they should be properly trained.

People with long-term conditions may qualify for a range of benefits, tax credits, grants, payments and concessions. These may include help with transport costs and parking, help to buy support from a carer, housing benefit and council tax reduction, income support, working tax credit and VAT exemption.

Additionally special sources of finance might be available if the condition is occupation-related or they were a member of the Armed Forces.