In the garden shed are some tools, some half-finished projects that need your help and some seed trays with ideas that might one day grow into something worthwhile. Your comments will help them grow!
The last homely house
What makes a house a home? When a person with disabilities moves from their own home to live in a residential care facility or some other place, they lose their home. Some people technically retain their own home, but it is invaded by an army of well-meaning health and care staff, who unwittingly make the person homeless, even if they still hold the deeds or the tenancy. If we understand what makes a house a home, then we can perhaps learn to uphold the person’s sense of home. Read more here.
Please may I have a copy of my scan?
I am involved with a research project during which participants are invited to undergo a magnetic resonance imaging (MRI) scan. People, of course, have a right to receive a copy of the scan image, and, indeed, some people have asked for a copy of their scan image. A bunch of us mused about why, and then looked at some of the literature. Read more here.
What do we call this?
I’m sure there is a name for the phenomenon described below, but I can’t find it! Read more…
Painting the minibus
Should vehicles that belong to health and social care services carry their name, logo or other messages? Do these coachpainted adverts deserve the name stigmobile? Read more…
Payment for authors
People with lived experience sometimes work alongside academics to co-author academic papers. This is a hugely valuable contribution, but there is often unfairness at the root of it. Academics write for money, while experts by experience are sometimes expected to write for nothing . See more...
Preventing mental ill-health
The so-called mental health service in the United Kingdom is actually a mental illness service, with pitifully few resources devoted to promoting well-being and positive mental health. But let’s dream. What would a community look like if it promoted superb mental health and well-being, and what would a publicly funded service look like as part of that? Read more…
May authors use a pseudonym?
Academic publication is enriched by contributions from patients who bring their lived experience to the task of authoring or co-authoring. Some public co-authors wish to remain anonymous, as their story is sensitive or perhaps carries stigma. As long as they can be contacted via the corresponding author, it should be OK for them to use an incomplete name. Read more…
When must confidentiality be overridden?
In reading the confidentiality policies of advocacy organisations, I have noticed a range of answers to the question of what must be disclosed. We all know that there is a point at which the advocate’s duties to the advocacy partner or the community at large trump their right to confidentiality. But where does the line fall? Read more…
Is non-statutory advocacy different?
Advocacy providers might be classed into three groups – those who provide statutory advocacy only, those who provide only non-statutory advocacy and those who provide a mixture. Whilst all advocacy should comply with the Advocacy Charter, I wonder if those providers who only do non-statutory advocacy have moved into a slightly different space. Explore the distinctive nature of non-statutory advocacy here.
Volunteering in the NHS after a troubled past
I have been investigating whether people who have had a troubled past are supported to make a fresh start as NHS volunteers. It seems to be a bewildering process, which I am hoping others can help me understand. Review some of the issues here, and please get in touch if you can help me with this.
Easy Read information on FGM
A friend asked me recently whether it would be possible to find easy-read information for the public on Female Genital Mutilation. This would be useful for migrants who had a low level of literacy in English, and also people with learning disabilities. My search for materials and eventual discovery is detailed here.
Migrants and volunteering in the UK
On 16 August 2017, the UK Home Office published some bewildering ‘guidance’ on this topic. Whilst the detailed meaning seemed initially obscure, investigations resulted in some degree of comfort. Click here for more.
Privacy in staffed facilities
Staff teams in the UK tend to work under a culture of ‘share everything, record everything’, but this fails to uphold Article 22 of the United Nations Convention on the Rights of Persons with Disabilities. The General Data Protection Regulation has unhelpfully narrowed the popular conception of privacy to merely data protection. See here for an approach to big privacy that challenges the way that congregate care services do their work. See also this challenge to the Hive Mind that dominates most health and social care teams. .
Duty of Care
An independent advocate told me that they had no duty of care. I have been thinking about what they meant. Please check out my blog article here (published on the NDTi website here) and my longer reflections here and email me with your views.
Gender and Involvement
- How does gender influence the extent to which people volunteer and the roles they take up? A national survey found more women than men involved in volunteering. In a wider context, only 25% of Board members in UK FTSE-100 businesses are female (see here).
- My poll ran for 10 weeks from September 2015, asking the gender of the people chairing Patient Participation Groups in GP practices. 343 chairpersons responded, of whom 55% were female.
- On the positive side, this means that PPGs are twice as successful as industry at harnessing the talents of women in the top role. It might be instructive to explore what PPGs are doing so well that industry might learn from. At their most radical, PPGs have the potential to be social innovations that influence the traditional power relationship between health professionals and patients, whilst also promoting equalities, including gender equality (see more on social innovation and gender here).
- On a more challenging note, we might consider that, despite the finding that half of respondents are female, this is still a substantial reduction from the initial applications. so there may be still a ‘glass ceiling’. This may be akin to the ‘snowy white peaks’ of the NHS, a metaphor used to describe the fact that, while BME communities appear in the frontline, they thin out as one moves up the organisational hierarchy.
- Possible reasons for the lower proportion of women in chairing roles include a comparative willingness of men to bear responsibility, claim high status or carry out unpopular tasks. Women often bear a large burden of domestic and family issues, so are perhaps less available for other duties. Sometimes formal authority (i.e. the chair) and informal authority (i.e. personal influence) are held by different people.
- Challenges and limitations. (1) To date, 32 respondents (Clinical Commissioning Groups, Commissioning Support Units and NHS England) have indicated that they have no contact information for the PPGs in their area and/or are unable to forward the invitation to participate in the poll. This isolates them from a potent source of patient feedback in their geographical area. (2) The self-report poll has been criticised as a faulty method, as people might lie about their role and their gender. From another perspective, six staff have taken it upon themselves to report on behalf of others, in clear contradiction to the survey request for people to limit their response to self-report only. (3) The implication that PPGs should consider gender when making appointments is viewed by some as an unnecessary complication and burden on already hard-pressed volunteers. (4) Some PPGs operate without a chair, have several people serving as co-chairs or operate as a virtual group without any meetings. (4) The contract does not insist that the chair is a patient, so in many cases, the chair is a staff member. (5) We don’t actually know whether the gender profile of people getting involved as members of PPGs is about the same as that of wider volunteer activity.
- Some people make money from their personal experience of disability by giving lectures, writing or consulting to organisations. Is this an effective way to earn a living?
- Some employers offer a chance for their staff to engage in Employee Volunteering, perhaps through using their skills to help a local charity. Does this reap rewards for the employer too, as staff return to their desk with added enthusiasm and commitment, giving their voluntary effort to the workplace too?
- Some employers fear to hire a disabled person because they believe that they will never be allowed to dismiss them, even if they cannot do the job. What is needed is really effective performance management processes so that all employees are treated fairly and given good training and support, and so that the business remains profitable. What would reasonable adjustments in a performance management system look like?
- A big part of an effective relationship is to convey hope, especially to people who have temporarily lost hope. How exactly do we convey hope and encourage others to do the same? You can find some starter ideas for team culture here, but we need to know more about how individuals express their hope in one-to-one interactions.
- Safeguarding worries have increased the number of prohibitions. An inclusive approach acknowledges that the worker/client relationship sometimes gives way to one where we are fellow citizens in the same community. How do we balance safeguarding and inclusion in respect of social media and attending the same social groups when off duty?
- The Victorians wanted to make a good death. Lots of social care services are closing in response to the recession. How do you close something well? Click here to read an introduction to this issue.