« Previous | Contents | Next »
Listen
3. Involving people and supporting self- management
3.1 People as experts
Involvement in services was one of the issues people felt most strongly about, in particular people with long-term conditions and unpaid carers.
"[We need] to be heard without scepticism."
The 'bottom line' was that people with long-term conditions, unpaid carers and communities need to be included by professionals at all stages of their journey. This involvement must be central to providing services for people with long-term conditions and their carers. For this to happen services must understand the rights of the person to make decisions about his or her own needs.
" NHS [needs to] listen better. Hear what patients and carers are saying, act immediately if the issue is urgent."
3.2 Supporting unpaid carers
As well as recognising the expertise of people with long-term conditions, services must also understand the role of unpaid carers. People pointed out that supporting unpaid carers leads to better outcomes for people with long-term conditions. It could also mean large cost savings for services.
A key part of supporting people with long-term conditions is supporting unpaid carers.
Unpaid carers have a right under law to have their emotional, practical and financial needs assessed. Assessments should be done to help decide how much support an unpaid carer can provide. Assessments should also identify what kind of support the unpaid carer needs.
"Help people to recognise they are carers and give the right support."
The events highlighted some of the difficulties for unpaid carers:
- There is a dilemma when carers are not allowed to be involved in consultations with professionals. The reason is to protect a person's confidentiality. However, if a person needs constant support from an unpaid carer, for example to make choices or remember things, then they need to be included.
- There is not enough support for times when unpaid carers have to leave the person they care for.
- Unpaid carers do not always know their way around services, for example what is available or who to contact.
- The system is not responsive enough when there is a crisis or a change in someone's condition. Unpaid carers and people with long-term conditions need organised crisis support.
- Professionals tend to treat unpaid carers' descriptions of the situations they face on a daily basis 'with a pinch of salt'. Carers' testimonies must be taken seriously and at face value. If this does not happen there is a risk that carers lose faith and confidence in services. This could be damaging for the person and the unpaid carer.
3.3 Self-management
"Even if you spend 15 hours a week going to physio, GP, OT, etc. there are heaps of hours left in the week when you're on your own."
People were aware that Scottish Executive policy is to promote supported self-management. This was largely seen as positive but there were some fears about services 'abandoning' people and unpaid carers. During discussion the professionals at the event tried to reassure people that this is not how services view self-management. Professionals talked about approaches that harness people's abilities to reach the best possible outcomes. This should not mean people with long-term conditions and unpaid carers 'going it alone'.
Some people still had concerns about self-management and stressed that the right education and support must be in place.
Participants pointed out that the degree to which people want to self-manage will vary from person to person. Not everyone will want to self-manage and those who do not must have the support they need.
"It [self-management] is not to replace service provision, but in addition to your care."
"Self-management is particularly scary and challenging at the start after diagnosis and there should be more support made available from health professionals. Even just to contact them to ask questions without feeling like it's a hassle."
There were a number of suggestions about how self-management could be developed in Scotland:
- Self-management courses should be available to people on an ongoing basis.
- Courses should be developed using the experience and expertise in the statutory and voluntary sectors.
- Support groups are valuable in developing people's capacity to self-manage. There were mixed views about whether these should be condition specific or generic. Some suggested generic groups with 'bolt-on' sub-groups catering for condition specific needs.
- Reducing hospital stays is one of the aims of developing people's self-management skills. The savings made through this should be ploughed back into self-management education courses. This would ensure ongoing savings in the future.
"Diabetes management would be easier if we all had access to structured education programmes to teach/maximise self care skills (same info from every centre!)."
It was clear that self-management relies on more than just traditional health services. In particular people stressed how important complementary therapies and psychological support can be. Suggestions included:
- Access to treatment choices outside of the conventional NHS services, for example complementary therapies.
- Personal development in schools.
- Access to personal development tools.
- Techniques to raise self-esteem levels.
- Availability of life-coaching to raise and maintain self-esteem.
- Support with motivation.
Whatever self-management support is developed it must respond to the range of people's needs.
"Recognise self-management programmes are life long educational processes that must include the person and/or carers as well as professionals, including from the voluntary sector."
Unpaid carers or lay mentors can support people to self-manage. There was strong agreement that this has many benefits as long as professional support is there when people need it. It was suggested that people and unpaid carers should be able to access professional support by contacting a key worker/ co-ordinator. This should be through a variety of means including telephone, text messaging and email.
« Previous | Contents | Next »