Chapter 5: Outcomes
The comments demonstrate the impact that care and support has on personal outcomes and wider quality of life. Support influences independent living, social participation, and recovery, and the extent to which this is achieved depends on a range of issues relating to access, coordination and management, and the delivery of safe and appropriate services.
This section focuses on the extent to which people felt that care and support helped to improve personal outcomes in relation to:
- Social connectedness
- Stress and anxiety
Independence was one of the areas that people were more positive about. Positive comments focused on how care and support has enabled people to live independently in the community. Participants described various types of support and the ways in which this facilitated independent living, including the provision of aids and adaptions to enable people to stay at home for longer and prevent hospitalisation.
"The service is excellent, absolutely essential and most valued; without it, myself and my spouse would have been in hospital."
"Having a grant from the council to make adaptions to our home has meant we can stay here and I can still have some level of independence."
"I get help from the [name removed] who take me out twice a week, and I get housing support from [name removed], which helps me live independently, this gives me a good feeling and I don't need to rely on my elderly parents so much!"
However, some responses revealed that a lack of adequate care and support has led to negative outcomes. Some comments described people being housebound due to lengthy waiting times for adaptations to be installed. Others described people being admitted to residential care as a result of not receiving the required supports.
"If help/support had been provided whilst I had been in my own home I would not have needed to go into a residential nursing home when I did. My family struggled to care for me, my mobility failed and I suffered an injury resulting in my hospitalisation. I never got to return home and could not express my wishes regarding my care. The choice was not made by family but via social workers."
"Having seen my care and support dwindle away - now less than three hours each week, I'm really struggling in trying to maintain my independence. Whereas before I had home-helps, social (and hospital) support, I now only have one visit with food and medication each week meaning that I'm very isolated as a result. I cannot afford private care and feel very much a burden and abandoned by those who should be assisting me."
Responses highlight the importance of social support. For some people, contact with support workers is their only form of regular social interaction, and for others the provision of support facilitates their wider social participation in the community.
"My personal carer makes a huge difference to my life, she makes me smile, laugh and feel young. She does a lot of housework and helps me collect prescriptions, re-orders for me, helps cut my nails, keep my feet clean and moisturised. Most of all her company means a huge amount to me."
"Independent living has made me free to follow my inclinations regarding my attitudes in society, government elections, awareness and above all my worship in local and other church buildings."
There were also responses from people who did not have the support they felt they needed, which described feelings of loneliness and isolation. This further highlights the importance of care and support in maintaining or establishing social connectedness.
"Overall care provider left me without warning and had then been left isolated for months until another new system and care support could be found and is still on-going."
"There is no care in the community, the only help I receive is from my mum. I'm in my house 24 hours a day with no visits apart from mum. Nobody cares about what happens to me. I'm [age removed] and my life is over."
"I don't feel I get much support from any outside parties except my own GP and my [age removed] son. I am very isolated and spend a lot of time upstairs in my bedroom as I can't get up and down stairs most days as I am very breathless."
Stress and anxiety
Whilst many responses demonstrated the benefits of care and support in relation to health and wellbeing, other responses revealed the negative impact of delays and difficulties in accessing and coordinating support. Comments described experiences of stress and anxiety associated with availability, fragmented services, and lengthy waiting times.
"The main problem is the daily battle to get the services that are required. Information is not passed between agencies in a timely manner (if at all), and the time between requests for services and the execution of said services is too long. This is an incredible source of stress and adds to the suffering and discomfort of the patient and the carer."
"Difficult to get care quickly. It took 7 weeks to get care package from social services, even though doctor stated it was urgent. Spouse collapsed through stress. Had to threaten council with [correspondence removed] and care was arranged within one hour! Disgusting."
Several comments made reference to receiving good quality care and the positive impact this had on the recovery process. This was particularly evident in mental health care where social and psychological forms of support were viewed as important in supporting recovery journeys.
"This last few years has made a remarkable difference to both of us and I reckon that my [family member removed] would not be alive today due to the excellent care, especially in our home."
"I have found all my carers very helpful and supportive and I look forward to them coming as I have been very seriously ill and they are helping my recovery."
Other comments described how not receiving support at the right time could be detrimental to recovery. Responses also described the impact when families had to take on additional responsibility to provide support.
"I received no aftercare support whatsoever. My CPN [Community Psychiatric Nurse] did not contact me. I was very vulnerable and definitely took longer to recover as a result. I felt totally abandoned by the NHS. It took the care of my relative who came to stay with me upon my discharge to take all this upon their shoulders to pull me through. It was too much for them. I feel quite angry no aftercare was in place."
"This is speaking about the care of my mother in law. We initially had choices, treated very well and then closures happened. When moved hospitals we were not given information/choices and her care and well-being has greatly been effected."
Comments demonstrated the role played by support workers and equipment in generating feelings of safety. In particular, responses described how community alarms and e-health technologies help to make people feel safe and secure in their own home and within the wider community.
"The alarm from the council I wear gives me such a lot of confidence."
"I moved to sheltered house, which I have found to be a great help for me. I am a widow, therefore I feel safe in my sheltered home. The care is marvellous."
"Being profoundly deaf, I get great support and all helpful equipment needed to help me feel safe and secure."
Other comments showed that people had concerns about their safety. Some people had concerns about being alone and not having anyone around to assist in the event of an accident or in their health deteriorating, whilst others felt vulnerable because of constant changes of support workers.
"Well sometimes I've fell a few times and hurt my head, it is very scary when you're on your own. Also, I've knocked myself out. Also I've took epilepsy fits as well."
"Home care in the evening has been inconsistent and this does not make me feel safe. Too many different workers at night."