Written evidence submitted by Ms Elizabeth Ann Johnston (CMH0132)

Submission for Community mental health services review

Summary.

The most effective community mental health service I have used in 34 years of dependence on Psychiatric services is the women only Crisis house in Camden and Islington. As a place to give support for crises when I can not cope, it allows me to continue to live in community, supported. Everything else was better funded and more humane before ‘community care’ was invented and under funded.

I have been involved in mental health services since 1991, witnessed the dismantling of mental health services due to philosophical shifts which have consistently made lives more difficult.

Beds closed, Day hospitals closed, GPs taking on psychiatric roles, Diagnoses used to separate out groups in place of individual treatments dependent on personalised care.

Those with severe mental ill health need layered care options for our psychiatric care. Some people will need life long intense support, requiring supervised, supported living for the whole of their lives to feel safe, to manage well their conditions. Others need independent living in the community with access to support for crisis management and respite care for times of overwhelm.

It has been proven over the last 25 years that Community Treatment Orders are not working well for those with life long conditions, increasing isolation and despair.

The current benefit system is compounding the suffering with endless reassessments of people, who, like me were given Indefinite DLA awards and then for years getting annual reassessments.

It is not clear policy makers understand the reassessment processes  for those with mental illness have our conditions made so much worse we need in patient care to manage the reassessment processes.

NHS costs related to these hospitalisations do not appear in the DWP budget, there is no recording of the huge additional costs created by DWP actions on individuals who’s lives are further harmed. Conditions made worse, by the introduction of PIP and UC with Migrations, from legacy benefits.

My lived experience is that ‘community care’ from the 1990’s has not worked for the benefit of the patients. Because the funds were never put in place to support the facilities ‘imagined’ with the initial policy structure. Community treatment orders were supposed to relieve pressure on hospital beds, treating people ‘in the community’ which leaves people further isolated an coping alone at home. It’s not what anyone wants to hear but we need more beds for acute and others for longer term stays. Isolation and neighbour troubles are problems faced by many with severe and enduring mental illnesses.

We need choice around where we are placed, choice to self refer- with assessments- so learning to self manage, learning to recognise our distress earlier. The earlier we can get help, the less traumatising a hospitalisation can be, the shorter the stay and the more therapeutic that stay will be. Learning this takes many years, this is also not taken into account by policy makers, removing from traumatising hospitalisation is also compounding longterm mental illness.

Day hospitals which are drop in, offer meals, social spaces, Occupational therapy groups, as well as outpatient appointment spaces were removed because it looked like people were ‘too dependent’. What was actually happening was socialisation in safe spaces to the level that the people there were capable of. It is very difficult to socialise in a safe way when extremely vulnerable and frequently taken advantage of- cuckooing for drug houses - when we live in a world that is high risk for vulnerable people.

Another service I found extremely useful is the Women Only Crisis house run in Camden and Islington NHS. I can self refer, it is 12 beds, women only staff and clients, 4 week maximum stay with a trauma informed philosophy. There is ongoing support through a weekly support group for women who have stayed there. The beds are always entirely full and waiting lists active. Referrals can be made through care coordinators, GPs, from hospital wards along side self referrals. I believe I am only alive today because I have access to this unique facility. It has also helped me to learn to manage my condition through being able to choose to self refer there. In place of becoming so unwell as to need police intervention and sectioning under the mental health act as has happened in the past for me.

Outside the scope of this committee possibly I believe community mental health services can only work when providing enough places for everyone who may need them in acute wards as well as day services. It requires acknowledgement that anyone with life long mental illness condition will need support. Inpatient care of some kind will be needed for the rest of our lives when facing crises. All lives experience crisis from time to time. That secure and appropriate housing, long term benefits allocations, access to GP ongoing support, Psychiatric outpatient care ongoing to manage conditions in your own chosen way. These are all fundamental to giving people a chance to self manage and have at least a chance to learn more about how to manage the self. This is the only way to have more people able to function safely and low cost in the community.

Like all human beings, we need to have choice, to express our preferences when our life long care is involved. We need safe places to live. Safe places to self refer ourselves to when in crisis, before it becomes too much. We need reliable income levels which if reassessment is needed comes between 5 and 10 years apart if it is clear from our history that things are unlikely to change.

Our internal worlds are chaotic, fragile, frightening, full of threat and despair. Many women I know are survivors of unimaginable trauma from damaging homes, male violence, and our ‘mental illness’ seems like reasonable response to these harms. What we desperately need above all is somewhere to find safety around people. Also outside your scope is the immense need for individual talking therapies as ongoing support to help comprehend what life has handed us.

I hope some of this is useful, I would be happy to come and talk in person about my 34 years in the psychiatric system, what had been useful and what had been destructive about the services offered through those years.

February 2025