Huntington’s In Mind, a campaign to highlight the mental health struggles associated with Huntington’s disease.
The Huntington’s Disease Association launches Huntington’s In Mind, a campaign to highlight the mental health struggles associated with Huntington’s disease and the need for equitable access to mental health services
- To coincide with Huntington’s Disease Awareness Month (May), and in response to findings around the mental health challenges experienced by people with Huntington’s, a new campaign is launched to raise awareness of the needs of people living with Huntington’s and the current lack of access to mental health services
- Huntington’s disease is a rare incurable, hereditary and degenerative disorder of the brain which significantly reduces life expectancy[1]
The Huntington’s Disease Association (HDA), backed by their celebrity patron and actor George Rainsford, has launched a new campaign, Huntington’s In Mind, to raise awareness of the complex mental health needs of people living with Huntington’s and the disconnect in access to mental health services.
The campaign has been developed with the community and centres around the stories of three families affected by Huntington’s disease. The powerful films will be released through the month of May, and each serve to tell the story of the mental health impact, of the challenges accessing mental health support and of some encouraging and inspiring reflects of hope and advice.
The actor George Rainsford (Casualty, Call the Midwife), a patron of the HDA is supporting the campaign, “Having met many amazing families, I’ve seen the impact that Huntington’s disease has on the mental wellbeing of those living with the disease and their families. The hereditary nature means no member of the family is left un-touched and therefore all those affected should be able to access the right mental health services and support they need. Whilst every individual and family situation is different, they all have one thing in common, their incredible strength and resilience.”
This campaign launches as new research identifies substantial gaps in the numbers of specialist centres being able to access mental health professionals. Centres treating Huntington’s disease describe access to services as “inadequate”, with many centres reporting that less than 25% of people living with Huntington’s disease are able to access psychologists, psychiatrists, or counselling when required.[2] Many services also report limited access to community mental health support, with some people living with Huntington’s disease excluded due to lack of awareness by health care professionals.2
Professor Hugh Rickards, Consultant Neuropsychiatrist and Chair of the Huntington's Disease Association, is passionate about ensuring equitable access to mental health services for people living with Huntington’s Disease. “I see first-hand the challenges faced by patients, who must firstly deal with the psychological issues of their diagnosis but then the complex mental health impacts that the disease itself causes. This is not widely recognised or understood and at an institutional level, so we need to do more to ensure people living with Huntington’s disease and mental illness have the same access to specialist mental health services as people living with other conditions like schizophrenia.”
The multi-faceted nature of Huntington’s disease and the complex testing process means that even if not directly impacted by Huntington’s symptoms, the mental health burdens can ripple across families. The psychological and emotional impact goes beyond diagnosis and is complicated by the aetiology of the disease itself, which impacts mental health as it progresses.
A Huntington’s disease community survey carried out last year highlighted that 69% of those who are symptomatic have experienced significant problems with their mental health, with 71% of carers feeling that their mental health has been severely impacted as a result of their caring responsibilities.3 It’s not just those who have the condition who are affected - 72% of family members who tested negative for the gene felt guilt or shame about relatives who do, or who may, have Huntington’s.[3]
Cath Stanley, Chief Executive of Huntington’s Disease Association, said: “Many find it difficult to receive equitable access to information and specialist services leading to limited physical and mental support following diagnosis. We know people living with Huntington’s disease can often fall into a referral loop due to a lack of understanding of how their condition affects mental health. We need to do more to educate health care professionals to recognise and provide the right mental health support at the right time for people living with Huntington’s disease. That is why we are determined to raise awareness around particularly the mental health issues around living with the condition so that those affected feel they are adequately supported. The Huntington’s in Mind campaign marks the beginning of a longer journey to ensure equitable access to mental health services”
More on the Huntington’s In Mind campaign can be found on the Huntington’s Disease Association website at https://www.hda.org.uk/huntingtonsinmind. The patient films will be released throughout the month of May.
-ENDS -
NOTES TO EDITORS
About Huntington’s disease
Huntington’s disease affects the body’s nervous system – the network of nerve tissues in the brain and spinal cord that co-ordinate your body’s activities. This leads to progressive deterioration – physically, cognitively, and mentally until the individual becomes dependent on the help of others. Symptoms include motor (movement), mental health (for example mood) and cognitive (for example learning and thinking) disturbances, which in the majority of cases appear in mid-adult life.1
Huntington’s disease affects around 8,000 people in the UK or 1 in 10,000 people.[4] Up to 32,000 people in the UK live at risk of developing the disease.4 It can start at any age, but symptoms usually first appear between ages 30 and 50. Symptoms gradually get worse over 10 to 25 years until the person dies. Every child conceived naturally to a parent who has the faulty Huntingtin gene that leads to Huntington’s disease has a 50% chance of inheriting it.1
About George Rainsford
Following George’s support as a celebrity ambassador for the Family Matters campaign in 2021, he was invited to become a patron of the Huntington’s Disease Association. George and the Casualty team worked alongside the Huntington's Disease Association for advice and support when creating the storyline. Researching for his character helped George to recognise how devastating and difficult life can be for those living with Huntington's and for their loved ones. George is dedicated to reflecting life with Huntington’s disease in an authentic and honest way.
References
[1] Huntington’s Disease Association. What Is Huntington's Disease. Available at: https://www.hda.org.uk/huntingtons-disease/what-is-huntingtons-disease/symptoms-of-huntingtons-disease [Accessed 25 April 2022].
[2] Research funded by Roche supported by UKHDN, HDA, SHA and HCD Economics
[3] Family Matters Community Survey. Conducted online 23 March to 21 April 2021
[4] Huntington’s Disease Association. Impact Report. 2019. Available at: https://www.hda.org.uk/media/3014/impact-report-2019-final-3.pdf [Accessed 25 April 2022].
The Huntington’s Disease Association launches Huntington’s In Mind, a campaign to highlight the mental health struggles associated with Huntington’s disease and the need for equitable access to mental health services
- To coincide with Huntington’s Disease Awareness Month (May), and in response to findings around the mental health challenges experienced by people with Huntington’s, a new campaign is launched to raise awareness of the needs of people living with Huntington’s and the current lack of access to mental health services
- Huntington’s disease is a rare incurable, hereditary and degenerative disorder of the brain which significantly reduces life expectancy[1]
The Huntington’s Disease Association (HDA), backed by their celebrity patron and actor George Rainsford, has launched a new campaign, Huntington’s In Mind, to raise awareness of the complex mental health needs of people living with Huntington’s and the disconnect in access to mental health services.
The campaign has been developed with the community and centres around the stories of three families affected by Huntington’s disease. The powerful films will be released through the month of May, and each serve to tell the story of the mental health impact, of the challenges accessing mental health support and of some encouraging and inspiring reflects of hope and advice.
The actor George Rainsford (Casualty, Call the Midwife), a patron of the HDA is supporting the campaign, “Having met many amazing families, I’ve seen the impact that Huntington’s disease has on the mental wellbeing of those living with the disease and their families. The hereditary nature means no member of the family is left un-touched and therefore all those affected should be able to access the right mental health services and support they need. Whilst every individual and family situation is different, they all have one thing in common, their incredible strength and resilience.”
This campaign launches as new research identifies substantial gaps in the numbers of specialist centres being able to access mental health professionals. Centres treating Huntington’s disease describe access to services as “inadequate”, with many centres reporting that less than 25% of people living with Huntington’s disease are able to access psychologists, psychiatrists, or counselling when required.[2] Many services also report limited access to community mental health support, with some people living with Huntington’s disease excluded due to lack of awareness by health care professionals.2
Professor Hugh Rickards, Consultant Neuropsychiatrist and Chair of the Huntington's Disease Association, is passionate about ensuring equitable access to mental health services for people living with Huntington’s Disease. “I see first-hand the challenges faced by patients, who must firstly deal with the psychological issues of their diagnosis but then the complex mental health impacts that the disease itself causes. This is not widely recognised or understood and at an institutional level, so we need to do more to ensure people living with Huntington’s disease and mental illness have the same access to specialist mental health services as people living with other conditions like schizophrenia.”
The multi-faceted nature of Huntington’s disease and the complex testing process means that even if not directly impacted by Huntington’s symptoms, the mental health burdens can ripple across families. The psychological and emotional impact goes beyond diagnosis and is complicated by the aetiology of the disease itself, which impacts mental health as it progresses.
A Huntington’s disease community survey carried out last year highlighted that 69% of those who are symptomatic have experienced significant problems with their mental health, with 71% of carers feeling that their mental health has been severely impacted as a result of their caring responsibilities.3 It’s not just those who have the condition who are affected - 72% of family members who tested negative for the gene felt guilt or shame about relatives who do, or who may, have Huntington’s.[3]
Cath Stanley, Chief Executive of Huntington’s Disease Association, said: “Many find it difficult to receive equitable access to information and specialist services leading to limited physical and mental support following diagnosis. We know people living with Huntington’s disease can often fall into a referral loop due to a lack of understanding of how their condition affects mental health. We need to do more to educate health care professionals to recognise and provide the right mental health support at the right time for people living with Huntington’s disease. That is why we are determined to raise awareness around particularly the mental health issues around living with the condition so that those affected feel they are adequately supported. The Huntington’s in Mind campaign marks the beginning of a longer journey to ensure equitable access to mental health services”
More on the Huntington’s In Mind campaign can be found on the Huntington’s Disease Association website at https://www.hda.org.uk/huntingtonsinmind. The patient films will be released throughout the month of May.
-ENDS -
NOTES TO EDITORS
About Huntington’s disease
Huntington’s disease affects the body’s nervous system – the network of nerve tissues in the brain and spinal cord that co-ordinate your body’s activities. This leads to progressive deterioration – physically, cognitively, and mentally until the individual becomes dependent on the help of others. Symptoms include motor (movement), mental health (for example mood) and cognitive (for example learning and thinking) disturbances, which in the majority of cases appear in mid-adult life.1
Huntington’s disease affects around 8,000 people in the UK or 1 in 10,000 people.[4] Up to 32,000 people in the UK live at risk of developing the disease.4 It can start at any age, but symptoms usually first appear between ages 30 and 50. Symptoms gradually get worse over 10 to 25 years until the person dies. Every child conceived naturally to a parent who has the faulty Huntingtin gene that leads to Huntington’s disease has a 50% chance of inheriting it.1
About George Rainsford
Following George’s support as a celebrity ambassador for the Family Matters campaign in 2021, he was invited to become a patron of the Huntington’s Disease Association. George and the Casualty team worked alongside the Huntington's Disease Association for advice and support when creating the storyline. Researching for his character helped George to recognise how devastating and difficult life can be for those living with Huntington's and for their loved ones. George is dedicated to reflecting life with Huntington’s disease in an authentic and honest way.
References
[1] Huntington’s Disease Association. What Is Huntington's Disease. Available at: https://www.hda.org.uk/huntingtons-disease/what-is-huntingtons-disease/symptoms-of-huntingtons-disease [Accessed 25 April 2022].
[2] Research funded by Roche supported by UKHDN, HDA, SHA and HCD Economics
[3] Family Matters Community Survey. Conducted online 23 March to 21 April 2021
[4] Huntington’s Disease Association. Impact Report. 2019. Available at: https://www.hda.org.uk/media/3014/impact-report-2019-final-3.pdf [Accessed 25 April 2022].