Strategies used to cope with multiple health problems
• being prepared and on the alert,
• developing the role of an expert patient and,
• “pushing” or “fighting” for one’s own health needs.
Specific strategies involved the use of support groups, online information and libraries. Some people appeared to have taken on tasks that would normally be done by services, such as issuing recalls for appointments, instigating tests and investigations, and arranging patient transport. However, others did not want to become knowledgeable about their condition or even came to regret knowing about poor prognosis.
Being prepared and on alert
The uncertain fluctuations of symptoms, disease progression, pain or side effects from a newly added drug gave people a sense that they had to be on constant alert. Amy spoke about starting every day “with her fists up” against whatever was to come. The need for constant vigilance was an underlying feature of those interviews where people described living with a condition (such as diabetes or epilepsy), that was poorly controlled. Andrew wouldn’t go anywhere without a mobile phone in case of emergency. Tammy took sweets with her whenever she went out in case of having a diabetic hypo. Loraine might suddenly feel unwell whilst relaxed and at rest. Steve had a pituitary condition which he had to alert other medical staff about as it could be life threatening. However, this constant vigilance had downsides. Lottie felt that having to remember to take medication everywhere had taken the spontaneity out of life. Her husband is “on a knife edge” when his mobile phone rings in case it is news of her having a seizure. Becoming an expert patient
Some people were developing ‘expert patient’ roles. This involved gathering as much information about health conditions as possible to help with managing them. This was usually achieved through searching for written information and/or getting involved with health charities or research projects. When Pat was put on a new drug her diabetes got worse so she read the drug information leaflet before contacting her GP. John, Fred and Loraine were all acting as patient experts in medical research projects and/or as patient representatives in health forums or NHS services. Tammy, Sue and Michael X volunteered for disease societies or patient charities. Ann and Michael X had attended pulmonary rehabilitation sessions that included education about self-management of their condition. Tammy had attended the DAFNE course for diabetes self-management. Michael X had also attended the NHS Expert Patient Programme. Graham was a tutor on that programme. Sue had delivered presentations to health professionals about her experiences of stroke services. Jean had been used as a “dummy patient” as part of recruitment processes for a new doctor at her surgery. Amy was unusual compared with the others in that her expertise derived from extensive use with health services including an extended period in hospital, rather than from training or other methods. However, some people had observed that doctors didn’t always react positively to patients who were knowledgeable. Loraine felt frustrated that not all doctors she dealt with recognised her expertise and listened to her. Others had found that having past experience of working in health services led to a more equal relationship with the professionals. Patients whose expertise was respected by professionals had been allowed to manage certain aspects of their care themselves. Robert was very active in his own treatment to the extent that he ordered his own tests at the practice and had been given emergency drugs to allow him to self-administer them in the event of a chest infection. Anne X self-managed her own warfarin blood tests and dosage. Other strategies mentioned by the people we interviewed included:
• Take responsibility for your own health
• Use patient support groups / disease charities for medical advice (e.g. Breathe Easy, Epilepsy Society, Heart Clubs)
• Attend specialist voluntary courses on self-management (e.g. diet in diabetes, pulmonary rehabilitation)
• Do your own research in libraries or on the internet
• Keep your own medical records so that you can access information when needed
• Act on your own initiative if your life depends on it However, there were some opposing views on becoming more involved in one’s own care. Barry avoided health information to the extent that he had thrown a medical dictionary away. Gogs’ story was interesting in that, whilst she was a former health worker with access to specialist information, she appeared to regret having that knowledge when she was found that she was in the 10% minority of rheumatoid arthritis patients where control had not been achieved with the available medicines.
Pushing for what you need
A popular strategy was the idea of having to “push” or “fight” for your needs in services. This reflects concerns that people can’t always get the care they think they need. The people we spoke to reported having “pushed” for a variety of things including better hospital food (Fred), extra supplies of tablets to allow for dosing mistakes (Loraine) or a referral to another service. Pat asked for a referral to a hospital diabetic clinic, Michael X wanted a referral to a pulmonary rehabilitation clinic, Lottie to a neurologist who specialised in epilepsy, and Val to a gym.
Sue, who had a stroke in her 40s, described how a lot of aspects of her care had been done “off our own backs”. This included locating charity funding to enable her to pay for aspects of her own care. However, as others noted, this kind of “pushy” approach is seen to require confidence to be able to challenge health professionals when necessary. David suggested that patients sometimes need confidence to speak up but describes how pointing out a problem can help a doctor to address it. However, sometimes no amount of fighting will get you access to what you need if there are insufficient services available. Jean failed to get what she wanted from social services, and Farza was having difficulty in gaining access to a Community Psychiatric Nurse.