Earlier this year, I blogged about a study into the use of direct payments for individuals who lack mental capacity to consent, a so called ‘indirect payment’ managed through a ‘suitable person’.

This research has examined the ‘lived experiences’ of parent-carers who have fulfilled the role of ‘suitable person’ for their children, who live in their own homes. The researcher has drawn on her own doctoral study which focused on twelve parents’ experiences of carrying out this role by managing a direct payment for their adult child who has severe learning disabilities, autism and very complex support needs.

The researcher set out to consider how research may have a greater impact if someone who has an intimate experience of the topic under scrutiny. This carries risks in terms of the potential for bias and a lack of impartiality, potentially affecting the quality of the research, but offers an insight into the experiences of this particular group.

Method

The researcher explains that the study was born out of “my own insight and experiences of managing a DP (Direct payment) on behalf of my own adult child”. The article contends that it can therefore be seen as emancipatory research in that it was generated and controlled from the bottom up.

A qualitative methodology was developed, using an ethnographic approach incorporating elements of narrative to enable the parents in the study to ‘own’ their own data.

Participants were recruited via professional and personal contacts. The researcher acknowledges that this could be seen as a biased sampling process but argues that insider access to participants is exactly what underpins emancipatory research (Cameron et al 2004).

A multi-method approach was utilised to generate data, making use of semi-structured interviews, observation and participant observation. Data analysis involved an inductive approach using thematic analysis (Braun & Clarke 2013).

Findings

The researcher’s doctorate was completed in 2013 and yet none of the parents in the study had experienced a mental capacity assessment for their adult child. They had not had an explanation or information about mental capacity or about the suitable person role regarding best interest decisions. The study found that parents took on the role of suitable person firstly because of an unsuitability of alternative arrangements. The research contends that the second reason was that parents were “persuaded by the idealistic vision of social change via personalised services”

The research reported participant views of community care reviews, many of which appear critical of the process, with statements describing:

• “Distrust and difficulties …between social care practitioners and SPs (Suitable persons)
• “abusive behaviour”
• “Conflict and fear”
• “Oppressive and self-serving practices”
• “Social workers were routinely seen as ‘the enemy'”
• “Parents viewing the professionals as incompetent”

Positively, the research comments that being given the role of ‘SP’ demonstrated to parents that their local authorities saw them as “expert care partners” (Department of Health 2010a).

However the researcher has subsequently remarked that there was a suggestion that parents were being bullied into managing unsustainable care packages, concluding that current practice did not appear compatible with policy rhetoric of ‘partnership working’.

Other findings included the perceived ‘informality’ of the ‘SP’ role being a disadvantage for the parents, participants expressing feelings of ‘deep hopelessness’ and disclosing suicidal thoughts, but an acceptance from participants that they would choose to carry out the role if asked again.

Conclusions

Broadly, the research notes a general lack of understanding about the Mental Capacity Act, capacity assessments and best interest decision-making.

The research recommends that the experiences of those who have taken on the role of a suitable person should be taken into account for training purposes.

The research also exposed an unequal power balance in the relationship between parents and practitioners and highlighted that the same goals are not always shared, with confrontations often revolving around funding. Independent advocacy was recommended.

The research concludes that parents views and contributions should be “recognised and valued”, that they should be “appropriately supported” and that Direct Payments are “adequately funded” to enable the role of SP to be carried out effectively.

The researcher also concludes that practitioners were at times invading the privacy of parents, and alleges that this amounts to a form of abuse. The research describes this area of social care practice as “an unusual one” and argues that “insider” research is advantageous in offering a better understanding of how the clash between lived reality and policy rhetoric affects people’s lives.

Strengths and limitations

This insider perspective has some weaknesses in that its perspective is narrow and subjective; the research at no point offers any consideration of the view of the individual whose direct payment is managed (although I accept that this may not be achievable at least in some cases due to the extent of their severe learning disability) nor of the practitioner, nor suitable persons who are not parent-carers.

Whilst ’emancipatory research’ has value, future research carried out by an ‘outsider looking-in’ would arguably provide a more balanced, impartial perspective and should (I would hope) source participants without the need to use personal contacts. The fact that the researcher sourced participants through personal as well as professional contacts raises the capacity for accusations of bias.

The research describes a ‘legal bias’ in favour on local authorities, contending that they can “airbrush out” SPs without having to identify any concrete safeguarding concerns.

However, a capacity assessment and best interest decision would need to have been completed to ascertain whom should be a ‘suitable person’, and the suitable person would have a strong case to make if a local authority acted contrary to the best interest decision by removing that suitable person.

The suitable person should challenge the authority at the very least through a complaints process, and the authority itself has a duty to follow a legal process in making decisions about who should be the ‘suitable person’ by following the Mental Capacity Act and its guidance. Family members should be included within any best interest decision and a decision made on a partnership basis with all those involved in the individual’s care.

The random removal of a suitable person without requisite evidence and justifications as to the reason for this, would likely not stand up to in-house scrutiny via a complaints process.

So, the Mental Capacity Act offers protection for the individual in promoting their best interests and having guidance provided via a thorough ‘best interests checklist’, (although more generally I do not deny an entrenched power imbalance in favour of ‘the system’ over the individual).

Summary and analysis

Many of the statements made within this research demonstrate a worrying trend in the relationship between the Suitable Persons and Practitioners. The research is replete with statements made by the participants claiming that local authority workers are working purposively against them.

However, the research is grounded in a very specific perspective – that of parent-carer, and this represents just one group of individuals acting as ‘suitable persons’. This can be seen to limit the reliability of the research in analysing the general working relationship between suitable persons and practitioners/local authorities.

It is difficult to form a judgment of the role of the suitable person on the basis of this research given the small number of participants coming from one specific group (parent-carers). The reliability of the research is questionable as it appears possible that participants were selected by the researcher, raising the possibility of researcher bias, whether conscious or unconscious.

Moving forward, it would be helpful to research the experiences of suitable persons more broadly, from a wider group both demographically and geographically in order to draw conclusions and identify where improvements in practice can be made.

Links

Primary paper

Coles, B. (2015), A ‘Suitable Person’: an ‘insider’ perspective. British Journal of Learning Disabilities, 43: 135–141 [abstract]

Other references

Braun, V. Clarke, V. (2013) Successful qualitative research: a practical guide for beginners London, Sage Publications

Cameron, A.M. Lloyd, R.E. Kent, N.A & Anderson P.L. (2004) Researching End of Life in Old age: Ethical Challenges. In: Smyth, M. Williamson, E. editors. Researchers and their ‘subjects’: ethics, power, knowledge and consent. Bristol, The Policy Press: 105-117

Department of Health (2010a) Carers and Personalisation: improving outcomes. London, HMSO