Social workers in the CF team have an important role to play in helping patients and their families cope more effectively with the inevitable stress of having a chronic illness, by offering emotional support, counselling, practical help and advice. Referrals for social work assessments come from a variety of sources, usually health professionals, parents or patients themselves. At the time of referral a social assessment is done to assess the patient’s needs, and provide services where possible. These services include:

• Psychosocial assessment and support after referral for transplantation
• Emotional support
• Counselling
• Advocacy for patients
• Liaison with other agencies
• Financial and benefit advice
• Housing advice
• Referral to local authorities for aids and adaptations
• Respite for parents and carers
• Help with home care
• Referral to charities

The role of the social worker is particularly valuable during times of crisis because we can visit people at home. This helps us build a holistic picture of the patient’s life and what support networks are available and any other areas of difficulty for the family. Social workers have a vital role in helping with relationship difficulties and preventing isolation. We have access to various charities that will provide help with holidays and with buying some household appliances, and with the expense of inpatient hospital treatment. Contact can also be made with the patient’s local social services department so that local services can be accessed.

Discussion with social workers is strictly confidential and would not be shared with others without permission from the individual or their families. However, social workers have a responsibility to protect patients from harm and are statutorily bound to disclose information about people they believe to be ‘at risk.’ They also have a statutory duty to investigate the need for child protection whenever there is a concern.

Social workers have a working knowledge of the system of benefits/allowances. Caring for a person with CF can involve considerable expense and it is difficult for people on a low income. The following pages give a brief outline of the charities and organisations that may be able to help and what benefits may be claimed. Please bear in mind that the benefit system is extremely complex and it is recommended that you seek advice from your social worker/welfare rights worker with regard to your own individual situation.

Agencies and charities

The Cystic Fibrosis Trust

The CF Trust provides patients and families with knowledge specific to CF. The website (www.cftrust provides a range of useful information that includes articles, information about medical research as well as information about living with CF and publications that are useful and informative. The website provides an opportunity for patients and their families to meet on line and share their own experiences. The CF Trust offers financial assistance in the form of welfare grants to those who may be experiencing financial difficulty in times of crisis, helps with essential items when a person may be called for transplant, and offers holidays and respite funds.

Useful contact numbers include

Cystic Fibrosis Trust helpline 0845 859 1000.

Benefit Advice helpline 0845 859 1010

Welfare Grants helpline 0845 859 1020.

Family Key Worker Project

The Family Key Worker project is a Leeds based project. This aims to provide support and practical help for families with children who have multiple disabilities and complex health needs. A worker is allocated to the child and family and supports and advises families about accessing services for their child in their local area. Anyone can be referred for help. For further information about whether your child meets the eligibility criteria, or for general advice, please contact the project directly on 0113 206 3226.


React is a national based charity that aims to improve the quality of life for children and families who are financially disadvantaged. It can supply equipment to support children at home, e.g. specialist wheelchairs, beds, baths and essential every day items such as washing machines and tumble dryers, as well as providing financial support with travel and subsistence during hospital stays, and mobile home holidays.

Telephone: O208 940 2575


DIAL is a national based organisation that provides a whole range of information and advice about services for disabled people.

You can find your local DIAL by using the interactive map on the website or by contacting: 0130 231 0123.

Family Fund

The Family Fund is a registered charity that covers the whole of the UK. It aims to provide grants to families with disabled children. Family Fund advisors meet families in their own homes to make an assessment of their individual needs. The fund operates criteria to determine whether a family or individual is eligible for help.

To be eligible for a grant income must be less than £23,000 gross (excluding DLA). The Fund can help with holidays, driving lessons, travel expenses, bedding and washing machines. The Fund will also consider awarding a family a grant when essential refurbishment and decoration has been undertaken after adaptations to the home.

For more information please contact 0845 130 4542

Dream Holidays

Dream Holidays is a charity which provides respite holidays for children with CF and their families. Referrals can be made through various health professionals. If you require more information please speak to your social worker directly or refer to the charity website,

or contact them on 0198 385 7754.

Benefit Information for children and adults with CF

The following information is a guide to the benefits which people with CF may be entitled to depending on their individual circumstances, such as employment status, national insurance contributions paid, dependents, capital, income and medical condition.

 Allowance section under construction