10.1 Support needs of patients, families and carers

A diagnosis of cancer throws patients and their families into an unfamiliar world where they have to cope with unusual medical, financial and legal issues. Healthcare professionals can support patients and carers, enabling them to cope with the diagnosis of cancer and its associated emotional and psychological distress. Information and support are key parts of the National Cancer Strategy.¹⁶³

A systematic review of studies involving women with gynaecological cancer shows that providing them with information is beneficial, can improve ability to cope and facilitate their participation in treatment decisions.¹⁶⁴ Evidence level 1+

Patients diagnosed with cancer for the first time often want information addressing their immediate concerns regarding their disease, treatment options, what they might expect during return appointments and who to go to for information. Four studies indicate that cancer patients want information on their treatment and prognosis.^{165, 166, 167, 168} Patients prefer to receive written information to assist them to make an informed choice.¹⁶⁶ Evidence level 2+

A cohort study carried out in the West of Scotland highlighted that cancer patients want to know the medical name of their illness, their treatment choices, how treatments work, the likely side effects and chances of cure.¹⁶⁸ Evidence level 2+

Eight RCTs^{169, 170, 171, 172, 173, 174, 175, 176} and one systematic review¹⁷⁷ were identified in relation to the information and support needs of cancer patients. None of the studies were specific to ovarian cancer but were generalisable to the ovarian cancer population. The number of participants in the trials varied from 36 to 525 and the groups were heterogeneous. The interventions studied included structured emotional support, relaxation techniques, the use of audiocassette recordings of consultations, orientation programmes and general psychological and/or emotional support. The interventions reduced anxiety levels and improved quality of life. Evidence level 1+

Patients should be offered verbal and written information throughout their journey of care and should be made aware of the support mechanisms that are in place and how to access them.

Structured emotional support should be available to all patients and carers.

Voluntary sector agencies can be used to expand the levels of support available to patients and carers.

10.2 Further information for patients, families and carers

CancerBACUP Scotland
Suite 2, 3rd Floor, Cranston House, 104-114 Argyle Street, Glasgow G2 8BH
Tel: 0141 223 7676, Fax: 0141 248 8422. Freephone help line available 9am to 7pm, Monday to Friday: 0808 800 1234
www.cancerbacup.org.uk

Offers a free cancer information service staffed by qualified and experienced cancer nurses. There are a growing number of CancerBACUP centres in hospitals and a freephone information service on all types of cancer, staffed by specialist cancer nurses. Produces over 50 booklets and ‘CancerBACUP News’ three times a year.

Cancer Research UK
PO Box 123, 61 Lincoln’s Inn Fields, London WC2A 3PX
Tel: 020 7242 0200, Fax: 020 7269 3100
www.cancerresearchuk.org

Macmillan Cancer Relief Scotland
Osbourne House, 1-5 Osbourne Terrace, Edinburgh EH12 5HG
Tel: 0131 346 5346, Fax: 0131 346 5347
Helpline: 0808 808 2020, Monday to Friday 9am to 6pm
www.macmillan.org.uk

A UK charity supporting people with cancer and their families with specialist information, treatment and care.

Maggie’s Centres Scotland
The Stables, Western General Hospital, Edinburgh, EH4 2XU
Tel: 0131 537 3131, Fax: 0131 537 3130
The Gatehouse, Western Infirmary, 10 Dumbarton Road, Glasgow, G11 6PA
Tel: 0141 330 3311, Fax: 0141 330 3363
Email: maggies.centre@ed.ac.uk
www.maggiescentres.org

The goal of Maggie’s is to keep people who have cancer as healthy in mind and body as is possible, by enabling them to participate actively in the treatment of their disease.

Tak Tent Cancer Support Scotland
Flat 5, 30 Shelley Court, Gartnavel Complex, Glasgow, G12 0YN
Tel: 0141 211 0122, Fax: 0141 211 3988
Email: tak.tent@care4free.net
www.taktent.org.uk

Promotes the care of cancer patients, their families, friends and the staff involved professionally in cancer care by providing practical and emotional support, information, counselling and therapies as required. Network of local support groups throughout Scotland. The Youth Group, conTak, provides support for 16 to 25 year olds affected by cancer.

Ovacome
Elizabeth Garrett Anderson Hospital, Huntley Street, London, WC1E 6DH
Tel: 020 7380 9589. Office is staffed Monday to Friday 9am to 4pm
Email: ovacome@ovacome.org.uk
www.ovacome.org.uk/

A UK wide charity providing information and support for all those affected by ovarian cancer including patients, relatives, carers and health professionals. Newsletter produced four times a year and fact sheets on many aspects of ovarian cancer are available on request.