Advice for people living with multiple health problems
• “getting on with it”,
• being positive,
• looking after yourself whilst accepting limitations,
• using the support available,
• the importance of finding a good GP and
• prioritising your conditions and/or lifestyle.
Further specific advice was given around prescriptions, hospital letters, volunteering and complementary therapies.
John and Anne Y felt that it is important for people to talk about their problems with family and friends. For Anne Y, being able to joke about her epilepsy made it easier for her and members of her family to cope when she had seizures. For John, speaking with family members formed part of a broader strategy of taking on the realities of his conditions, which also included finding support and making plans for the future. ‘Support’ often involved disease charities or patient support groups. For example, Ann had found fantastic support from a local Breathe Easy group. However, Gogs also mentioned social workers and distinguished between free and paid for services via organisations such as Age UK. Ronald, Rosemary and Robert were among those who felt that people should follow medical instructions and just “get on with it,” which seemed to suggest that such an approach would be aided by a positive or optimistic mind set. Being positive and pushing yourself was mentioned explicitly by Amy, who had nearly died in hospital. For Pat, the aim for patients should be to feel a sense of control in managing their health problems. For Val, people are responsible for their own bodies and therefore should get informed and develop collaborative relationships with doctors to manage the conditions together. Lottie advised people to research their conditions on the Internet but to take care to use only reliable websites. Rosemary mentioned the importance of people “keeping moving.” Angela suggested people should “keep fighting” and Barry stressed the importance of not giving up. Both Loraine and Fiona said that it was important to recognise that you control your health conditions – they do not control you. At the same time as “being positive” or “getting on with it,” people interviewed also referred to the importance of accepting one’s limitations. Mohammed likened the body to a motor car and suggests the importance of not pushing too far. He advised people to prioritise their different conditions or lifestyle issues. For Nigel, coping involves looking after yourself and “keep fighting.” Robert spoke about acceptance in terms of lifestyle adaptations or other changes brought by treatment as it’s “better than being dead.” Specific advice involved eating healthily (Derrick) and losing weight (Eric). When offering advice for other people living with multiple health problems, several of the people we interviewed spoke about the importance of finding a good GP. The key role of GPs in managing people with multiple health conditions is also underlined in recently published guidance from NICE (National Institute for Health and Care Excellence).
Gogs spoke in detail about the need for a good GP given that they can act as your advocate with the rest of the health service. For Amy, her GP was seen as her most useful resource. For Fred, GPs were best used sparingly. This view could have been affected by the fact that it was difficult for him to get appointments with his preferred GP as she was very popular and worked part time. For Pat, the key lies in finding an individual GP who listens and understands you the best. Communication was highlighted. For example, David felt able to talk to his GP about coming off medicines that were causing problems. Lottie said that people shouldn’t be afraid of asking doctors questions. In addition to the broad issues raised above, some of the people we interviewed mentioned more specific things which they had found a help. Gogs advised people to tell the hospital what they wanted to happen to letters about their care (e.g. if they didn’t want to receive copies themselves). Steve was using an app on his Smartphone that reminded him when to take his medicines. He also encouraged people to find out whether they were entitled to free prescriptions. Anne X recommended people to explore complementary approaches that can promote wellbeing, such as laughing or singing therapy.