Navigating Mental Health and CP with DisabilityPlus

Richard_Scope

This conversation is dedicated to elucidating the nuanced relationship between mental health and cerebral palsy (CP), challenging prevailing misconceptions, and promoting a comprehensive understanding of the unique challenges and stressors faced by individuals with CP. Through a series of focused sections, we aim to dissect the complex interplay of factors affecting the mental well-being of those living with CP, distinguishing between inherent mental health conditions and the psychological impact of external life stressors. Our goal is to reshape social perceptions and foster a more accurate and empathetic understanding of the mental health landscape within the CP community.

1. Beyond the Myth: Mental Health and Cerebral Palsy – This section debunks common myths, clarifying that not all individuals with CP experience mental health issues as a direct consequence of their physical condition. It underscores the importance of distinguishing between mental health issues that are intrinsic and those that stem from external stressors and societal challenges.

2. The Transition Challenge: From Youth to Independence – Highlights the significant shifts in support systems as individuals with CP transition from adolescence into adulthood. It discusses the impact of these changes on mental health and advocates for sustained support to navigate this critical period.

3. The Social Context of Mental Health – Examines how societal attitudes, discrimination, and lack of inclusivity contribute to mental health challenges, reinforcing the notion that external stressors, rather than CP itself, often exacerbate feelings of isolation and mental distress.

4. Navigating Life’s Challenges – Addresses the day-to-day hurdles faced by individuals with CP, including accessibility issues and the struggle for independence, and their implications for mental well-being.

5. The Carer’s Journey: Recognising Burnout – Focuses on the mental health of carers, acknowledging the physical and emotional toll of caregiving and the necessity for support mechanisms to prevent burnout.

6. Supporting Carers: Strengthening the Foundation – Proposes strategies to support carers, thereby enhancing the quality of care for individuals with CP and ensuring the well-being of both parties.

7. Adapting to Professional Care Dynamics – Discusses the importance of consistency and understanding in professional care settings to mitigate stress and promote mental health.

8. Empowering Through Counselling: Skills for Life Beyond Cerebral Palsy – Explores how our counselling services equip individuals with CP with coping skills to navigate life’s challenges, highlighting the distinction between everyday stressors and mental health issues.

This summary serves as an index, guiding readers through our comprehensive exploration of “mental health and cerebral palsy”. By distinguishing between inherent mental health conditions and those precipitated by life’s stressors and societal misconceptions, we strive to illuminate the path towards a more informed, supportive, and inclusive community.

forgoodnesssake

Interesting.  And I agree that it is very hard to tease out what aspects of any MH issue is due to societal pressures/anxieties etc and what may be a direct result of brain damage (and my family member with CP does feel pretty confident as a disabled person and is actually very definite that their MH issues are not due to being disabled, but of course it's a very complex interplay).  

I still think however that the physiological brain damage (esp if to the basal ganglia and related areas as in athetoid CP) can frequently have a very big impact on MH issues as emotional regulation is often very affected. This is something that is becoming more and more talked about in certain arenas and directly affects someone in my family.  

I am of course not denying that life factors play a big part, but one of the issues faced by people with CP is that there is no commissioning pathway to neuropsychiatric provision for those "whose MH issues relate to brain damage occuring in the neo-natal period" ie CP..(or so we have been told by 2 separate ICBs/community mental health services)

So this leaves often very complexly affected people with CP and MH issues with only core services, and GPs for prescribing, in what is an extremely specialist field.

In addition if people have a communication impairment and/or use AAC (alternative and augmentative communication) many do not find the traditional "talking therapies" to be of much use.  Not everyone of course but without going into huge detail, if you have never had speech, then all your language pathways (in the brain) are different to those of a talking person since you never have "intention to speak" neurons: you have "intention to spell" or "intention to point to a symbol".  So potentially totally different internal lexicon...sorry hard to explain!

I'm afraid to say that the majority of the young adults I know now who use AAC and have CP (often athetoid) have some level of MH anxiety, OCD negative thoughts etc and many are prone to "meltdowns" where all control is lost.  These are extremely distressing for the young person and for their families and supporters and can involve physical flailing and kicking as well as shouting (not words) crying and sweating.  This is very much related to emotional dysregulation which is often present in children but becomes much more obvious and significant after puberty and into young adulthood.

NB: this is not all CP AAC users...but just based on my conversations with other families in a similar situation to ours, where we began to realise that we were all having to deal with some similar issues.  And the young people involved are in various life stages and settings, none in adult residential care but some at college, one or two at Uni, some unemployed but active, some living in supported accommodation (on their own) and some living with family.

One thought I have had is that with the move to much wider social and educational inclusion (in theory anyway) and the advent of much better AAC provision (again in theory at least) many more young people who would have previously had little or no education and probably been shut away in an institution are now living in the community, accessing at least some education, a social life etc.  And so those who had no speech and a significant physical disability in the past would have had virtually no means of communicating and therefore any "meltdowns" and the like would have been just an accepted aspect of them being "handicapped".  And indeed many people in that situation would have been extremely frustrated which would almost certainly contribute to their MH breakdowns.

However the fact of many AAC users with CP (not all...i want to keep stressing that) still having emotional lability and dysregulation issues even when their lives are very different to how they would have been even 50 years ago, indicates to me that there is definitely at least in part (and a significant part) a physiological cause that needs specialist neuropsychiatric support (not just being told to phone the Samaritans, which my family member has been told by local Crisis team on more than one occasion!)

The need for specialist neuro physiotherapy (like Bobath and so on) has been recognised for years but somehow MH has been overlooked.