Written evidence submitted by Turning Point (CVD0016)

 

Background

 

Turning Point is a leading social enterprise providing health and social care services for people with complex needs at 350 locations across England. We have been supporting people to make changes in their lives since 1964.

 

We support people to improve their health and wellbeing whether that be at home, within the workplace or through our specialist services, building on our expertise in substance misuse, mental health, learning disability, autism, acquired brain injury, sexual health, healthy lifestyles and employment. The impacts of COVID-19 have been most acutely felt within our learning disability service where we have had to help protect some of the most vulnerable people while also keeping our workforce safe.

 

Turning Point has provided specialist support to people with a learning disability for over 25 years. We deliver high quality support for people with complex needs, including autism, behaviours that challenge, mental ill health and dementia. Our goal is to support people with a learning disability to have more choice and control over their daily lives. Through our supported living and outreach services, we support people as they develop independent skills, become active participants in their local community and gain training and employment to enable them to make a vital contribution to society.  In our residential care services, we use technology and specialist aids to support people to maintain and increase their independence. We also specialise in delivering community-based support for people with a learning disability who have been detained under the Mental Health Act. We work with individuals providing specialist support and advice to help them improve their quality of life have greater ambition for their lives and to reduce behaviours that challenge which enables them to do this.

 

Disabled people’s access to healthcare services, including treatment for COVID 19 and access to other healthcare services

DNACPR’s

A worrying trend has emerging within the health and social care system, people with learning disabilities and autism are having Do Not Attempt Cardio-Pulmonary Resuscitation or Do Not Resuscitate instructions unlawfully written into their patient records.

If a person has capacity to make a decision about CPR themselves, they must be consulted about such an instruction being placed on their records. If the person lacks capacity to decide for themselves about CPR, then the doctor making the decision on their behalf must follow the procedures set out in section 4 of the Mental Capacity Act. This includes consulting the person themselves, anyone caring for them, and anyone else interested in their welfare, including family. The purpose being to determine what the person’s wishes, feelings, values and preferences would be if they could decide for themselves.

We are seeing DNR orders that have not been discussed with the person themselves, the staff who support and care for them, or their families. This is very concerning as it may potentially lead to people being denied life-saving treatment that other patients would be granted. National medical director Professor Stephen Powis has said that learning disabilities should never be a reason for issuing an order not to attempt CPR.  

This is a human rights issue. Even during such testing times as we are in now, these freedoms are sacrosanct and protected by the Human Rights Act (1998), Equality Act (2010) and United Nations Convention on the Rights of Persons with Disabilities (2006). Existing health conditions or impairments, that are unrelated to an individual’s chance of benefitting from treatment, must not play any part in decision-making regarding equal right to access such care

Within Turning Point we’re receiving an unprecedented number of DNRs which do not meet legal requirements. The amount over the past month is the same we’d normally have to challenge over a whole year. Our experience echoes reports from the British Institute for Human Rights of doctors issuing DNRs without consultation.

To try and help halt this practice, I’ve put my name to letters issued by National Voices and Disability Rights UK which call for changes to be made regarding how these decisions are made. The recommendations include that the value society puts on lives must not influence decisions to treat.

Another key demand is that existing health conditions or impairments, that are unrelated to an individual’s chance of benefitting from treatment, must not play any part in decision-making regarding equal right to access such care

The mental health of disabled people, including the effects of isolation, access to mental health services and the implications for disabled people of temporary changes to the Mental Health Act

Our Mental Health Provision

Turning Point deliver services across the mental health pathway from online “Find Out More” guides through to residential crisis services, all providing evidence-based interventions underpinned by robust clinical supervision and clinical governance.

Turning Point has developed a range of digital resources to support health and wellbeing and these are provided as part of our commissioned services, including within our learning disability services. These resources are evidence based and have been developed by our team of clinical psychologists. There are 3 levels of support available online: 

Changes to the Mental Health Act

The Government’s Coronavirus Act made changes to the rights of people detained under the MHA to stop the virus spreading and prioritise resources.  However these have not yet been implemented by Regulations and may now not be needed.  We hope they will never be needed because of the interference with patients’ rights and reduction in the safeguards built into the MHA.

The most significant of these is the length of time a detained patient can be treated without consent or a second opinion (extended from 3 months from date of detention, to 3 months starting from the point when these restrictions end). 

Section 17 leave is important for people to connect with the outside world in what is a very difficult time for them. Despite the Coronavirus Act not changing this section, it has been accompanied with guidance on only going out when ‘absolutely necessary’.

There is anecdotal evidence of all leave being stopped for some detained patients, sometimes by ‘blanket rules’ that do not take account of individual needs or circumstances.

Detained patients may have found that they can now only go out escorted (to ensure compliance with social distancing) but this requires more staff escorts to be available just when staff are isolating, sick or dealing with extra duties such as infection control and cleaning.

Some detained patients have been confined to just their one small hospital room for most of the day which is far more restrictive than most of us have experienced in our own homes, and this can have a serious negative effect on their mental state, particularly so where there is psychosis, paranoia, or delusional ideas as to the real reason for lockdown restrictions.

Hospital facilities vary enormously and although all patients should have access to fresh air and exercise within hospital grounds, in some cases only very small areas are available meaning only one or two patients can be outside at any time without compromising social distancing.

These restrictions also affect patients’ ability to socialise with each other, which is as important to good mental health as having visitors and access to the outside world.

It is up to all of us in the mental health sector to be creative and make sure that those who are detained under the MHA still receive the freedom to experience the outdoors as much as possibleA similar issue has arisen with regard to visiting being restricted over this period. This can have a huge toll on the people we support and their families; there clearly exists real human costs to this separation. We must try and use video calling and other means to ensure these social connections are maintained.  We note that at least one family has successfully taken legal action to challenge blanket restrictions on visiting.

In addition, no policy can ever be seen in isolation, it always forms part of a broader picture. It is for this reason that the changes to the Care Act 2014 are having a notable impact on people we support. These changes could see significant numbers of people having Local Authority support withdrawn as they prioritise their resources elsewhere. Providers may need a lot of assistance to provide an adequate service where this happens.

When this crisis is over, it will be crucial to quickly re-establish that support, and in fact increase it, because many more people may need help with their mental well-being than before this crisis started.  Few of us will be left without scars in one form or another.

With regard to persons with disabilities who are not detained under the MHA,  we refer you to the June 2020 interim report by Inclusion London  ‘Abandoned, forgotten and ignored - The impact of the coronavirus pandemic on Disabled people

The COVID- 19 crisis has put into focus the strengths and weaknesses of the Mental Health Act and associated legislation; it is for this reason that when this crisis is over and some normality returns that we must be on the front foot in advocating for change. When government resources allow, they must return with high priority to the review of the MHA and the Liberty Protection Safeguards. The Crisis must be a springboard to increasing protections and safeguards for those who need it most and we must not shy from this pursuit.

Talking Therapies

Turning Point provides talking therapies services (IAPT) in Wakefield and Luton. They play a key role in ensuring the mental health of people, including those with learning disabilities. They are more developed in terms of digital service delivery models. They are high volume services with 21,000 people supported across the 2 services last year.

At Step 2, nationally there is 60:40 split in terms of tel/face-to-face therapy. Pre-COVID, in our Wakefield service the split was 50:50 and in Luton it was 70:30 tel/face-to-face. The evidence base shows that telephone based support at step 2 is as effective as face to face support.   At step 3 there is less evidence about the effectiveness of digital delivery modes. In response to the lock down we have moved more clients on to telephone based therapy and we are also trialling 2 video technologies: Webex (a video conferencing tool primarily used for business communications) and Live Experience (which is very similar to the tool being used by the NHS).  

Early on we moved the majority of step 2 clients onto telephone based therapy. We estimate a very small proportion (less than 0.5%) dropped out because they didn’t want to receive telephone based support. 

We began to trial remote video therapy sessions for step 3 clients with a trauma based diagnosis w/c 18th May. The pilot has prioritised client with this groups because there is more evidence of the value of face to face in this cohort.  Approximately 40 step 3 clients have moved onto therapy sessions via video calls. Approximately 20% of step 3 client who were offered therapy via video or phone have refused. The service has continued to keep in touch with these clients with a view to recommencing once the services is able to provide face to face support. One (older) client signed up for the trial but had difficulty using the technology and decided they would rather wait for face to face support to start up again. The rest of the group has continued.   

The support being adapted and changed will have positive impacts in terms of accessibility for mental health services for people with learning disabilities into the future.

Social care for disabled people in their homes and in residential care settings, including the effects of easements to duties in the Care Act and the approach to monitoring and review of these changes

Changes to provision

During the early stages of the pandemic, the impact was most acutely felt within our residential and accommodation-based services where had to help protect some of the most vulnerable people while also keeping our workforce safe.

In March 2020 we suspended all non-essential face to face services including group work, social activities, drop-ins, outreach etc., moving to remote counselling and coaching either via phone or video calls in order to protect both those we employ, those we support and the wider community.

To ensure people within our learning disability services receive the best care during these unprecedented times we have also made other major changes:

             

Telemeds

The introduction of Telemeds into a service means staff and residents are able to communicate with a healthcare professional via a video link that connects the service to a call centre. If members of staff feel an individual requires some medical attention, they are able to call up Telemeds and are put through to a nurse or a GP. Health professionals are able to give advice based on what they are told as well as from what they can see in the live video feed.

A trip to the GP or to A&E can be difficult and stressful for some of the people we support and the Telemed scheme reduces the number of unnecessary visits, reducing pressure on the A&E department and freeing up time for other activities.

Telemeds are able to prescribe medication and arrange for a prescription to be collected from the pharmacy. This is a 24-hour service which staff can use to seek advice on caring for the people we support. Health professionals will also continue to monitor the person, and always ask staff to ring back in an hour and check how someone is and this has prevented numerous hospital visits.

Having Telemeds in the supported living homes has allowed the service to support people in a far more person-centred and compassionate way and has reduced anxiety for the people we support. It also gives assurances to family members that people are getting the best possible support they can to stay healthy and well.

Care Act Easements

The Coronavirus Act made changes to the Care Act 2014 to enable local authorities to prioritise the services they offer in order to ensure the most urgent and serious care needs are met, even if this means not meeting everyone’s assessed needs in full or delaying some assessments

These powers would only be used if demand pressures and workforce illness during the pandemic meant that local authorities were at imminent risk of failing to fulfil their duties and only last the duration of the emergency.

In Derbyshire where we provide support to be people with learning disabilities, they have enacted these easements. However, Derbyshire County Council is facing a legal challenge which claims it has not followed the proper process for introducing the easements.

This case against the county on behalf of a local resident is on the grounds that the council had not provided enough evidence about how it had followed guidance on the use of the easements issued by the Department of Health & Social Care, which councils are under a duty to follow.

The guidance states that a council should only decide to exercise the easements when the workforce is significantly depleted, or demand has risen so it is no longer reasonably practicable for it to comply with Care Act duties and where to continue to try to do so is likely to result in urgent or acute needs not being met, potentially risking life.

We agree with Human rights group Liberty who have written to all the councils that have so far enacted Care Act easements, warning them that they are setting a “dangerous precedent”, “opening the door to stripping back vital safeguards which protect disabled people, their carers and anyone who relies on social care”.

July 2020