Bills and legislations consultations parent carer forum guidance

Proposed changes to the Mental Capacity Act 2005 Code of Practice and implementation of the Liberty Protection Safeguards

Policy briefing for parent carer forums

The Government are consulting on the proposed changes to the Mental Capacity Act 2005 (MCA) Code of Practice, which includes guidance on the new Liberty Protection Safeguards (LPS) system. The consultation is also seeking views on the LiPS regulations, which will underpin the new system.

You can access the consultation here.

This is a joint consultation published by the Department of Health and Social Care (DHSC) and the Ministry of Justice (MoJ).

The LPS will apply to people over the age of 16, and the Department for Education (DfE) has been involved in the development of this new system.

What is Mental Capacity?

Mental capacity is the ability to make decisions.

This could be small decisions like what we eat or the clothes we wear, or could be much bigger decisions, for example where we live and who we live with.

The Mental Capacity Act (MCA) sets some important key principles. 

  • The starting point should be that a person must be assumed to have capacity unless it is established that they lack capacity.
  • A right to support in making decisions: “A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.” The right to make unwise decisions: “A person is not to be treated as unable to make a decision merely because he makes an unwise decision.”
  • Capacity is based on a single decision at a single time, so some people may have fluctuating capacity, meaning they can decide one day and not the next depending on their wellbeing. Therefore, this needs to be taken into consideration when assessing capacity and considering a time when someone is likely to be at their most able to make a decision.

Provision is made in the Children and Families Act to deal with this.

Under the Act, lacking mental capacity has the same meaning as in the Mental Capacity Act (MCA) 2005.

The Mental Capacity Act 2005 sets out what should happen when people are unable to make one or more decisions for themselves. It clarifies the roles that different people play in decision-making, including family carers.

Children under 16

For children under 16, the Mental Capacity Act does not apply.  Instead, a child needs to be assessed whether they have enough understanding to make up their own mind about the benefits and risks of treatment – this is sometimes termed ‘Gillick competence’ and means that the child has the competency to give consent and make decisions. The term ‘Gillick’ competence is usually used when considering medical treatments.

What is Deprivation of Liberty Safeguards (DoLS)?

The Deprivation of Liberty Safeguards (DoLS), referred to as ‘safeguards’ are part of the Mental Capacity Act (2005). They aim to protect people in care homes, hospitals, and the community from being inappropriately deprived of their liberty or that the appropriate process is followed if the person does not have capacity and is being deprived of their liberty. 

When considering a deprivation of liberty for a 16- or 17-year-old, where the young person lacks capacity to consent themselves to arrangements which meet the ‘acid test’ for deprivation of liberty (i.e., under continuous supervision and control and not free to leave), it is not sufficient for parents to consent to this arrangement. In such circumstances the Court of Protection will often need to approve such an arrangement.

It is recognised that in most situations, providers and families are working in the best interest of a young person. Often when a young person is deprived of their liberty, it is usually with the purpose to safeguard them from harm or harm to others. However, when considering any action, for example preventing a young person from leaving a home, thought should be given to what is the least restrictive option for the young person, whilst keeping them safe.

What are Liberty Protection Safeguards?

The Liberty Protection Safeguards were introduced in the Mental Capacity (Amendment) Act 2019 and will replace the Deprivation of Liberty Safeguards (DOLs) system. The UK government is now consulting on draft regulations which will underpin the new system.

It is envisaged that the new LPS will provide a more streamline system to manage any deprivation of liberty. The implementation of these new arrangements has been delayed and so far, there is no confirmed date when they will be introduced. Therefore, the present arrangements will remain in place for the near future.

When introduced the Liberty Protection Safeguards will provide protection for people aged 16 and above who are or who need to be deprived of their liberty to enable their care or treatment and lack the mental capacity to consent to their arrangements.

People who might have a Liberty Protection Safeguards authorisation include those with autism and learning disabilities who lack the relevant capacity.

What does this mean for forums?

  • Forums should make their members aware of the proposed changes.
  • Forums may wish to respond to the consultation or share their views with the NNPCF Consultation & Policy Lead to inform the NNPCF response.
  • Forums should be aware of the how mental capacity is assessed and decision making supported in their local area for young people with complex needs.
  • Forums should consider how this may affect the education and wider outcomes children and young people with complex needs are achieving.

Covid-19 NHS England

NNPCF concerns about the implementation of the NHS Long Term Plan

The response and recovery from the Covid 19 pandemic and implementation of the NHS Long Term plan are critical to parent carer forums and are key priorities for the NNPCF.

We have been hearing very clear feedback on issues in the health system and around the implementation of the NHS Long Term Plan from parent carer forums and the regions.

NNPCF steering group members Kath Bromfield, Jo Gilliland, Ros Luff, Mrunal Sisodia, met with NHSE leaders Phil Brayshaw and Lorraine Mulroney on 18 March and shared some concerns with them.

1. Capacity across the system to deliver the key LDA projects.

We are aware of several capacity issues which are impacting ability to deliver on some of the key LDA projects. Factors include, in no particular order:

  • Community health services have huge waiting lists
  • Schools are struggling to remain open with the various Covid impacts. This includes staff sick absences and keeping ahead of the DfE contingency plans for exams and any future peaks in the pandemic.
  • Whilst there is willingness to engage with the Autism in Schools project, on a practical note schools may not be able to prioritise this.
  • Parent carers may be under extra demand with their caring responsibilities with children off school with covid related issues.
  • There is pressure on forums time resource where the projects overlap, and it is the same parents involved (see also co-production paragraph).
  • This has been compounded where some projects have been slow to start and are now being rolled out at pace, putting increased pressure on forums.

2. Disconnect between the regional implementation and the national team

There are differences between the national team vision and regional implementation. Whilst this will always be the case due to regional differences, sometimes it seems there is little link up. Regional teams are reporting that whilst the flexibility on how to implement projects is welcome and allows for regional / local implementation, they would appreciate more of a structure and framework on how to implement projects.

3. Quality of coproduction is very varied.

Feedback from forums indicate a very mixed picture around co-producing. Some areas were involved late on in a project whereas others were fully involved from the start.

We have heard that some experienced good co-production or engagement at the early expression of interest stage but then less involved as the project commenced. Some forums report only being involved at an interview stage but not in helping shape the role or service.

The increased use of virtual platforms has given opportunities for parent carers to be involved in a greater number of meetings & events. However, there has been a gradual drift away from involving their voices when organising these meetings. Often these are held at times which clash with school runs and other caring responsibilities. There is also a lack of recognition that parent forums work across partners, and this can lead to unreasonable expectation regarding availability.

There can be high expectations placed on parents to deliver presentations etc, often at very short notice.

One of the issues which impacts opportunity for good engagement or co production is that many health partners do not understand the nature of parent forums. i.e. forums are neither a supplier nor individual patient advisers. This issue is impacted further by high churn of staff.

On points 1-3 we agreed with Phil and Lorraine that we would work with the NHS LDA and SEND leads to coproduce a national, regional and local model of engagement and coproduction

4. Designated Clinical Officer / Medical Officer

DCO / DMO role remains very variable across the country. The resourcing issues post Covid and the move to ICS Integrated Care Systems is exacerbating these differences.

The roll out of ICS’s along with the changes has served to push SEND to a lower priority. It is hard for forums to keep abreast with the changes and navigate the new structure. This can also result in staff changes where relationships & understanding of forums need to be rebuilt.

Lorraine agreed to work with her SEND leads to cascade the key requirements of coproduction to the DCO

5. Strain on services in the wake of the pandemic

The pandemic has exacerbated the pressures on community health services (therapies, CAMHS, paediatricians). The already lengthy waiting lists have increased with higher demand from cohorts who are new to the services. This is causing extreme stress and increased harms in the system with families often waiting over 6 months for basic services

The loss or reduction of service during the pandemic has seen some of the existing users deteriorating and needing more specialised services. This is further impacted by many targeted / specialist services being on hold.

As a result of extra pressures in the system there is a struggle for services to manage EHCP and annual review workload. In turn, it is likely there will be greater demand for EHCPs and more looking to tribunal to obtain support.

Lorraine updated that work is ongoing at the senior levels of government to address these issues. She agreed to host a webinar in June to update parent carer forums. This has been scheduled for noon on 7th June.

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