Mental Health and Cerebral Palsy

Richard_Scope

 

In 2015, the World Health Organization (WHO) estimated that 322 million people worldwide experience depression and a further 250 million people have an anxiety disorder.  If you, or someone in your family, has a mental health issue, you are not alone. 

Mental and physical health are deeply interconnected.  While chronic health conditions such as Cerebral Palsy (CP) can increase the risk of developing anxiety or depression, untreated anxiety or depression can also contribute to poor physical health.  Mental health issues can disrupt sleep schedules, affect appetite, impact energy levels and disrupt cognitive processes and planning abilities.  They can also affect motivation and make an individual less likely to engage in healthy habits, make an effort to engage socially, or take care of oneself.  All of these things can aggravate or worsen any pre-existing physical health problems.  Social issues, including accessibility, can sometimes make someone with physical health issues more vulnerable to additional stressors or barriers.  For example, problems with access to transportation could increase social isolation or keep someone from accessing services or employment, and this could further aggravate mental health problems.

In people with CP, it is sometimes easy for doctors, caregivers, or the person themselves to overlook the importance of mental health, or assume that any symptoms experienced by a person with CP are caused by their CP.  However, people with disabilities or chronic health conditions may be as much as 3-4 times more likely to develop depression and anxiety disorders. Research suggests this link is not necessarily related to the severity of a person’s disability but is instead tied to things like levels of stress, management of pain and fatigue, coping skills, or family and social support.  Assessing a person’s mental health should be a key component of routine health screenings, and an issue that physicians, caregivers, and patients themselves are aware of.  Learning to recognize when someone is at risk, or is displaying symptoms, of behavioural and emotional problems is a key part of improving mental health, as early intervention is critical to prevent short-term difficulties from becoming prolonged and debilitating mental health conditions.

Youth with CP are particularly vulnerable to mental health problems

The transition to adulthood can be stressful.  Young adults find themselves facing many new challenges, including making the transition to adult health care, post-secondary education or vocational training, employment, independent living all while navigating adult social and romantic relationships.  It is during this period that many young people first develop anxiety or depression. Motor impairments such as CP, and any associated physical, cognitive or health complications, can intensify these challenges, and the stress they can put on a young person’s mental health can quickly compound any mental health problems or vulnerabilities. 

Young adults with CP often have lower rates of employment or post-secondary education and less participation in social activities and they tend to rely more heavily on their families for living arrangements.  One Canadian study found that, although teens with physical disabilities reported good self-esteem and strong family relationships, they tended to participate in fewer social activities, and have fewer close relationships with their friends   Another recent Canadian paper looking at changes in mental health over time found that youth with chronic health conditions, including CP, developed depressive symptoms more rapidly than their peers during early adolescence and didn't show the same decline in those symptoms in later adolescence.  The researchers also found another increase in depressive symptoms in those with chronic health conditions in their mid-twenties. 

Young people at the highest risk of depression were those who scored less well in family functioning questionnaires, whose parents were also depressed, and who had other family stressors such as low income or single-parent families. 

What are the symptoms of depressive disorders?

Patients, care providers and physicians should be aware of the increased risk of behavioural and mental health disorders among children and young adults with Cerebral Palsy, as well as among their caregivers.  Being aware of the challenges for children with CP and their families and being sensitive to the signs and symptoms of anxiety and depression, provides important opportunities for early identification, intervention and treatment.   

Depression is a complex disorder, and the symptoms can vary widely from person to person.  Not everyone with depression experiences every symptom.  Symptoms and impacts of depression also vary in severity, from mild to serious, and include a number of physical and emotional ailments.  

According to the National Institute of Mental Health, common symptoms of depression include:

• Persistent sad, anxious or ‘empty’ mood
• Feelings of hopelessness or pessimism
• Irritability
• Feels of guilt, worthlessness, or helplessness
• Loss of interest or pleasure in hobbies or activities that used to be fun
• Decreased energy or fatigue
• Moving and talking more slowly
• Feeling restless or having trouble sitting still
• Difficulty concentrating, remembering, or making decisions
• Difficulty sleeping, early-morning awakening or oversleeping
• Appetite or weight changes
• Aches and pains that do not have a clear physical cause and/or do not ease even with treatment
• Thoughts of death or suicide

To receive a diagnosis of a depressive disorder, symptoms must persist for at least two weeks, and be bad enough to interfere with your regular work, social life, or family life.  Importantly, other medical conditions can mimic depression and should be ruled out first, including brain tumours, vitamin deficiencies, and thyroid problems.

If you or a loved one are experiencing thoughts of death or suicide, please seek help immediately.  As children and young adults can display depressive behaviours in different ways, you should always consult a physician if you suspect someone may have mental health concerns. 

More information on the symptoms of depression. 

What are the symptoms of anxiety disorders?

Like depression, anxiety disorders can manifest in many different ways, including generalized anxiety disorders, panic disorders, or social anxiety disorders. Some of the early signs of anxiety in children and young adults can include:

• Rapid heartbeat
• Being “jumpy” or unable to sit still
• Dizziness, shakiness, excessive sweating or nausea
• Avoiding doing things involving other people or unfamiliar places
• Being overly worried about small things

For more information on the symptoms of anxiety disorders, and the types of anxiety disorders see:

What are anxiety disorders? | Mind, the mental health charity - help for mental health problems

What are the treatment options for depression and anxiety?

If you or a loved one is experiencing mental health issues, your primary care physician, a psychologist, therapist, or social worker can be of assistance. Remember, emergency suicide hotlines are always available.  When a person has depression, anxiety, or another mental health disorder, it can be very difficult to function as usual, and the act of asking for help is an important and positive step to help improve health and well-being.

Comprehensive care of mental health disorders should be managed alongside traditional medical care for other health issues. Mental health care can include a number of strategies, including stress management, physical activity, support groups and educational interventions. Finding what treatment, or combination of treatments, works best for you may take some trial and error, but with the guidance of medical professions, around 80-90% of people with depression respond well to treatment interventions.  The most commonly recommended types of treatments include Psychotherapy and Medication.

Psychotherapy

Psychotherapy, also known as ‘talk therapy, is a proven treatment method that works well as a standalone treatment for depression and is particularly successful in mild-moderate forms of depression.  Psychotherapy is more than just talking about your problems; rather, it uses well-tested psychological techniques, such as cognitive-behavioural therapy (CBT), to help patients identify problems, and develop skills and strategies for improving mental health and well-being.

Medication

Changes in the brain’s chemistry contribute to depression, and some medications that alter brain chemistry can also be beneficial in treating depression. Typical medications for depression include two types of antidepressant drugs called ‘SSRIs’ and ‘SNRIs’. Common brand names people might have heard of include Prozac, Paxil, Zoloft, and Celexa. The full benefits of antidepressants usually do not take effect until at least a few weeks or even months of use.

Although many physicians indicate that antidepressant medications are not habit-forming, you should always understand the side effects of these types of medications before you or a loved one decides to take them. Tapering off antidepressants can sometimes be physically difficult, so it is important to know both the pros and cons before making a decision to take any medication.

If You Need Immediate Help

If you suspect you or your loved one will self-harm or is suicidal, or if you just need someone to talk to, contact your hospital emergency department or a local crisis centre – a list of the available centres can be found here:

• go to any hospital A&E department (sometimes known as the emergency department) 

• call 999 and ask for an ambulance if you can't get to A&E 

• ask someone else to contact 999 for you or take you to A&E immediately 

If you need some support right now, but don't want to go to A&E, here are some other options for you to try: 

• contact the Samaritans on freephone 116 123, they're open 24 hours and are there to listen 

• contact your GP for an emergency appointment or the out of hours team 

• call NHS 111 (England) or NHS Direct 0845 46 47 (Wales) 

• contact your local crisis team 

forgoodnesssake

And there is virtually no specialist neuro psych help available on the NHS...my son has just got it in black and white that even the local "Physical Health Psychology team" do not deal with CP...so the only suggestions are a local CP charity (which do NO counselling type stuff at all) The local Carers org for us (!! been in touch with them for 20 years...and it in no way addresses the issues he has) and the local "First Steps" which is basically a bit of CBT, which he did about 4 years ago and which he finds completely unsuited to his communication disability...  However as his specific MH issues are expressly included in his Continuing healthcare assessment we can at least go back to the CCG and point out that as there are no core services to meet his needs they will have to find something....but that could take a while...

Richard_Scope

It is infuriating to the eighth degree!
Have you been in contact with Liz Whiteley? She is very good and may be able to help directly or provide access to peers with the requisite knowledge experience

forgoodnesssake

Not heard of her...thanks @Richard_Scope

JustPete

@Richard_Scope Thanks for this very well written and topical article raising MEGA important issues.
From my experience of depressive and anxiety periods in my own life, I have so much to say on this issue. I'm trying to think where to start...........

I'll start with the treatment via Medication. 
I a under a Neurologist for the dystonic movements caused by my CP.  It has taken a decade of seeing him and tweaking drugs to get my dystonia in a 'good-place'.  About 5 years ago (probably longer) I went to my GP as I recognised that I felt depressed for a variety of reasons.  My GP and the Partners at my surgery are fantastic.  My GP offered me Prozac.  I had already done my research and explained that Prozac, and other anti-depressants, would interfere, chemically, with my anti-spasmodic drugs.  He could not see any contra-indications between my anti-spasmodic drugs and Prozac.  I refused this course of action for a couple of weeks, returning to see another GP instead.  This GP spoke with me for 2hours, I left the surgery after-hours.  He had taken time to listen, understand, reassure me to try Prozac (even though he agreed that on paper there was a chemical contradiction on paper).  I agreed to a one-month trial.  My spasms went through the roof and I remember vividly thinking what was worse the spas or depression.  Ultimately, I decided that I could not cope with such high levels of spasm, came off the Prozac, and returned to being depressed and relaxed!


Psychotherapy, CBT, Counselling
I graduated with a Psychology BA and went onto MA's and MSc's.  When my neurologist suggested Pychotherapies and CBT I accepted with a great deal of scepticism.  Nonetheless,  I promised myself an open-mind in these 'interventions'.   However, both sessions (there were only 2) became a chat about Psychology in general and the techniques I already used.   So, neither helped me deal with issues any further.

Counselling - worked.  It took a long time, but the  counsellor was great.  She gave me no 'easy-touch' and challenged me to face up to difficult topics, and to commit to the process. 

I have a  lot more to write........I will do so in a seperate post!

JustPete

....cont.

In people with CP, it is sometimes easy for doctors, caregivers, or the person themselves to overlook the importance of mental health, or assume that any symptoms experienced by a person with CP are caused by their CP.  However, people with disabilities or chronic health conditions may be as much as 3-4 times more likely to develop depression and anxiety disorders. Research suggests this link is not necessarily related to the severity of a person’s disability but is instead tied to things like levels of stress, management of pain and fatigue, coping skills, or family and social support. "

So true!  The incorrect assumption that physical / mental health issues either emanate from one-and-the-same set of issues OR are biometrically apart, are both blunt assessments of the issues some of us face.  

I have seen counsellors who see my wheelchair and have already jumped to session number 5 without a word being spoken.   I have also seen counsellors who recognise the wheelchair but at least afford the opportunity to deviate away from the assessment/treatment/sessions.

What concerns me is I can recognise and articulate concerns when the above happens.  I am aware when low mood starts drifting into 'depressive states' or when 'worry about going out in a COVID world'  becomes 'social anxiety'.  Most people (forgetting disability) probably do not have this awareness.  Some disabled people might not be given the space to express this. 

.........I will continue..........

Danielle_2022

Thanks so much for your insights on this so far, @JustPete. Unfortunately, I can relate to a lot of these experiences. When I was in school and started seeing the counsellor as a teenager, she looked at me and said: "well, I know why you're here" before I had even said anything. (I also have CP and use a wheelchair). After that, I asked for more specialist help from my medical team and was never actually given an appointment. I think it's very easy to be forgotten with these things. None of it is easy but I'm glad that these spaces are so open to discussions about it. Hopefully this will all be part of fighting for a better future, hey?

I also totally agree with and share your concerns about disabled people not being given the space to express these emotions, particularly when they use alternative forms of communication. There is too much time spent assuming that they understand, only looking at one version of the narrative. Often, it's a "life as a disabled person is bad and therefore all negative emotions must singularly be linked to that" kind of thing, you know? But disabled people are just as complex as everyone else. There are so many different factors involved and being able to access the right care means recognising that, too.

It's all about changing perspectives, which is what we're here to do   

forgoodnesssake

Nothing has changed here...just being bumped from specialist Neuro-rehab centre back to crisis team...who can't help.  Awaiting a course of Cognitive Analytic Therapy...since the end of June '22 and no idea when it will start.  The rehab hospital say he does not meet criteria for neuro psychiatry...so only counselling offered...but who's then overseeing medication?  Just the GP who prescribes at a distance but no real ongoing monitoring...it's shameful and we are now desperate so looking for private options...but even they seem thin on the ground or are only interested in being expert witnesses....  I know about the various counselling services run by people with lived experience of CP but I am really not sure if that would be right for my son...and very hard to ask him atm.