Experiences of social care in the health and care experience survey 2015/16: analysis of free-text comments
This analysis of 4,000 comments aims to widen understanding of the factors that affect people's experiences of social care.
Chapter 4: Delivery
Comments demonstrate how various factors influence satisfaction levels with social care. There was a strong message about the need for consistent care, with regular workers who understand personal needs and preferences. On the whole, participants were positive about staff, focusing on the quality of relationships, inter-personal skills, and compassionate care. However, there was also recognition of the difficult employment conditions facing the social care workforce. Responses also emphasised the importance of having choice and control over care, and suggested that this could be limited by budget constraints and efficiency savings.
Due to the breadth of issues covered in relation to delivery, this section is split into two parts. The first section focuses on relationships with professionals, including experiences of compassionate care, continuity in services, and employment conditions. The second section examines comments relating to choice and control, including experiences of person-centred support, and the impact of cuts and efficiency savings in response to public sector budgetary constraints.
Part 1: Relationships with professionals
A number of comments referred to the relationships people had with care workers. Although there were some negative comments about relationships with workers, there were substantially more positive comments. Positive comments provided examples of highly skilled, professional staff delivering valued compassionate care.
The quantitative results from HACE show that 87 per cent of participants felt they were treated with compassion and understanding (Scottish Government, 2016b). This was echoed in the comments, which showed how compassion and understanding shaped care experience. Responses described the role of kindness and compassion in helping people to cope during times of adversity, and particularly in relation to palliative care.
"Having fell out of bed recently and unable to get up, I activated my community alarm. They took over and got a key and had me back into bed within the hour. The compassion, consideration, and efficiency the team showed was greatly appreciated and renewed my confidence in my safety in my home, even if I have a wee accident. Thank you all."
"A dear friend came to live with us for his last few days as he didn't want to die in a hospice or hospital. Once his GP was notified that he was with us a really good care package was put together giving him the care he needed and us the support that we also required sometimes. Thanks to care staff he had a pain-free peaceful and dignified death that was such a comfort to all who loved him."
Responses also highlighted the importance of interpersonal skills in delivering compassionate care. Care workers who were warm and friendly, respectful, good listeners, and made the effort to get to know the individual were valued. This is reflected in the quantitative results from HACE 2015/16 where 90 per cent of participants felt they were treated with respect. Notably, this was the area with the highest levels of HACE respondent satisfaction in relation to social care.
"I am very impressed with the gentle and thorough care the carers provide. They are confident in their work and very professional. I am very grateful for what they do and even in the short time they have been coming, the difference they have made."
"I have an excellent carer called [name removed] who is truly excellent helping me with my health, independence. I can talk to [name removed] about anything, she has the highest respect. I am grateful for her loyalty, patience, kindness and overall support helping me through a very difficult time."
However, some responses described negative relationships and poor quality care. These comments emphasise the need for people to be treated with compassion, dignity, and respect.
"The home care service is supposed to provide the same carers, but inevitably we find we see strange faces with no warning and a lack of dignity then ensues when asked to go into the bathroom to remove all clothing, so embarrassing!"
"Some people are patronising, I call it 'the poor old dear' syndrome."
"They need to be more aware that they're in a person's home and domain! And not to be giving people who are seriously ill orders or have bad manners and be disrespectful to the patient! And for more compassion shown to a person recovering from major operation, full stop!"
A recurrent message within the data is the need for continuity of care. The comments describe the value placed on having consistent carers at regular times, alongside the need for any changes to be communicated to service users. Participants described frequent changes to support staff and support times, without any prior indication of this.
"There are too many different carers from the care agency every week, this week there are 8 different ones."
"I receive support from [agency removed]. I regularly don't get rotas, times of support are not always the same as my support plan. [agency removed] don't contact with changes to times of the carers."
The comments illustrate the intersection between continuity of care, relationship building, and quality. Establishing relationships with care workers is important in ensuring that the care provided is responsive to need, taking into account personal likes, dislikes and preferences (Boltz and Galvin, 2016).
"My support staff have supported me for a long time and know me really well and I know them well too. As I am not able to vocalise on most matters, but people around me know me well and interpret my facial expressions etc."
"I have been receiving help for over five years, I was very happy with the carers that were allocated to me. But now I do not get my regular carers. I do not like this, and neither do they (the carers). New people turn up, they are not used to the house, and I do not like the change. I know a lot of people who feel the same, including the carers. It must be very confusing to dementia patients, and it is enough to send a 'normal' elderly person demented."
"Inconsistent carers provided by agency leads to poor service, not knowing me or what to do. No management of resources. In last three months have had 15 different female carers, and nine different males."
Having consistent support staff is particularly pertinent for those with specific conditions, including mental distress, dementia, and other cognitive impairments. Building and maintaining relationships allows workers to gain a deeper understanding of the individual and how best to meet care needs. The following quote is typical of the types of comments people made in relation to this issue.
"I have a carer that attends me five times a week - same carer. Next year that is going to change - our carer informed us that I could get a different carer every day, that's totally wrong (because they are putting all carers on shift work). With my cognitive and memory problems this won't help me at all. I am not looking forward to the change."
Comments were mainly positive about individual workers, but people felt workers were hindered by wider structures and organisational procedures. Comments described staff working in a context of poor employment conditions, including low wages, and high workloads. Participants commented on the negative impact this has on continuity of care.
"The actual carers were generally fabulous but their management are squeezing them too tightly to allow quality in their care provision. The organisation's culture appears to have become about quantity led targets rather than quality led care. This is becoming evident in staff ability and morale."
"[S]trongly feel support workers and care workers are undervalued, underpaid and overworked. They willingly go the extra mile and forego some of their own scheduled free time to help out workmates and make sure service users are safe and get the help needed, but their own needs are often ignored or belittled."
Some people who receive social care services expressed concerns about the amount of time assigned to complete tasks specified in the support plan. Responses described care workers not having enough time to travel between clients, with consequences for the amount of time allocated to each person.
"Time allocated for carers is not sufficient. It is important to have consistency in carers to build up a safe and secure relationship."
"Does depend on which carer comes (some are moved from other areas). Time slot is very tight for someone who doesn't know the routine! Otherwise usual carers excellent!"
Part 2: Choice and Control
The principles of choice and control are fundamental to social care policy in Scotland, emphasising the importance of co-production in the planning and delivery of support (Scottish Government, 2010) and are at the heart of self-directed support which is being embedded as the mainstream approach for social care in Scotland ( COSLA and Scottish Government 2016).
A key theme that emerged within the comments was the importance of choice and control for social care satisfaction. Positive comments focused on increased levels of choice which enables flexible, responsive support to meet needs and improve personal outcomes.
"This funding [direct payment] has allowed me to once again be in charge of how and when I receive care and who my Personal Assistants are. I am hugely thankful for this."
"I have a self directed support package, I feel it allows me to be a human being and do things I was able to do when I was able bodied. I try to live my life as normally as I can."
Not feeling listened to
Some people raised specific concerns about not feeling listened to and not having their choices acted upon. Instead of choice and control directing support plans to meet identified outcomes, in some cases wider administrative priorities shaped available support.
"[P]eople did not pay attention to what was important to my parents but instead gave them what they thought they needed."
"I would like to have the ability to choose what I want to enable me to care for my relative, not 'this is what you are getting', which didn't suit us as a family, disjointed care which led to my relative feeling unsafe and care package didn't work. So rather than taking pressure off me, it increased it."
Comments also revealed a lack of choice and control over support times in some cases. Receiving support at inappropriate or inconvenient times could disrupt daily routines and practices.
"My parent would like earlier visits in morning from their care package as she's lying down 15 hours a night."
"As I need help with dressing and undressing, the time that they come in the evening makes me unable to have any social evenings with friends, even just for special times."
Public sector finances and efficiency savings
A prominent theme was the impact of public sector budgetary constraints and services being under-resourced. Comments demonstrated concerns about increasing efficiency savings and fears about further cutbacks and closures.
"It seems to be getting taken off me due to cut backs, I have to pay for treatments."
"I go to a class weekly, locally in [area removed]. It is aimed at elderly people and gives gentle exercise classes to help keep you active and avoid falls, which can cost NHS a lot of time and money. It is very popular, gets lonely people together and yet is threatened by closure through lack of funds. We would not like to see it closed."
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