Iris and Sue discuss some of the difficulties encountered with care companies. including issues with communication and lack of apologies or acknowledgment from the carers when problems arose.
The conversation emphasises the need for better direct communication and transparency between the care company, the carers, and the family members supporting the care.
The importance of building trust through better communication practices is highlighted.
Sue talks about good care being when someone gets what they need, when they need it, in the right way as promised.
This is in contrast to a lot of contradictory experiences where things have been promised that don’t materialise.
She stresses the need for care providers to be more human, understanding, and communicative and touches on the importance of trust and transparency in fulfilling care promises.
Sue sets the context of supporting her 88 year old mother and 95 year old father at home for nearly 3 years. Sue has an extensive background in care, including over 47 years as a learning disability nurse and experience in various care provisions.
Her parents care has evolved from half-hour daily care to full-time live-in care. Sue contrasts her professional expectations with her personal experiences, highlighting significant challenges and disappointments with care providers.
Despite her and her brother’s efforts for transparent relationships and high standards, they faced issues such as inadequate training, poor communication, and lack of respect for their parents’ needs, leading to frustration and additional workload in managing the care.
Iris and her daughter Sue reflect on how it feels when she is not asked what she would like, how it makes her feel uncomfortable describing it as though she is not living in her own home. They talk about how they raise problems with the care provider and intervene when care is not thought through.
They talk about whether care workers are aware of the effect this has, touching on what prevents carers from understanding the experience and perspective of the person being cared for. Iris shares experiences of food provided by care support has been poor being served cold, not enough or strange concoctions like soup instead of gravy around a meal, leaving her feel uncomfortable and not listened to.
Sue notes that is is important to ask how someone might like a meal cooked rather than just what you want to east bringing to light what we take for granted ourselves and what being dependent on care looks and feels like.
Under One Roof work towards keeping people safe.
They talk about how this is achieved by building trust through non judgmental relationship where residents feel accepted. The way they work with addiction may seem odd to some people but they understand that people need to and will make their own choices.
They give several examples of how through nurturing relationships with residents it has saved lives. Residents have the confidence to share deeper conversations and share when they need help.
She tells the story of one person who had injected spiked heroin. Only because they felt comfortable enough to say they were concerned for themselves they got the emergency help they needed before it was too late.
Harry talks about the frustration of not being able to look after his garden due to his home support staff restricting him from using tools because of the risk.
This is despite having the experience and desire to learn from mistakes, he feels this is overprotective he is being treated like a child.
The conversation touches on broader theme of how disabilities can lead to patronising treatment, and the speaker advocates for the right to take positive risks and learn from them.
Iris talks about the care she recieves at home. She reflects on the positive impact of being asked what she would like, how she would like it.
She feels comfortable knowing she can ask and this highlights how important a caring approach is for her daily living.
Giving the example of something as simple as drawing the curtains in the moring, being asked if she wants them drawn is the difference to how they feel for the rest of the day.
Iris and Sue talk about what a difference feeling comfortable and confident to ask for things without feeling anxious make.Consistency and building relationships with caregivers are highlighted as key factors that make the care experience more comfortable.
Additionally, the company’s attentiveness and flexibility in swapping caregivers who are not a good fit contribute to a positive care environment.
Sue is asked what she thinks the Real Care Deal is and means. With her extensive experience working in the care field with Leaning Disability Sue is transparent that she feels cynical about another new name for something that has new words but remains the same.
She emphasises that unless it is followed by substantial action it is meaningless. Sue gives examples of her past experience where ‘new ideas’ have been launched to only experience the same problems, in particular people having to repeat the same information over and over and over leaving people deeply frustrated and exhausted.
Andrew shares his mixed experiences of receiving care since a toe amputation following a workplace accident.
Home care support was arranged after they returned from hospital, which he appreciated because they were struggling but reluctant to ask for help at first.
He recalls one carer who was excellent, but they were sacked by the care company, he found this upsetting and difficult.
Andrew talks about the set up of his care, how he has some choice over the carers, that the conversations he has is what makes the difference and his frustrations when cares leave before the time they have allocated.
