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Mental Health Services: Huntington’s Disease

Volume 830: debated on Monday 12 June 2023


Asked by

To ask His Majesty’s Government what assessment they have made of the number of people with Huntington’s disease displaying mental health symptoms who are being denied access to mental health services on the grounds that it is an organic brain disorder.

In begging leave to ask the Question standing in my name on the Order Paper, I apologise to the House as I should have declared my GMC board interest in the previous oral intervention.

NHS England has not made an assessment, as this is not data that is routinely collected or would be captured. Minister Whately has asked NHS England to look into reports that people with Huntington’s disease are being denied access to mental health services. NHS England is also in the process of developing a neuropsychiatry service specification, which will outline the approach to caring for patients with neurological conditions who require mental health support.

I am grateful to the Minister for that positive Answer. He may be aware that the Huntington’s Disease Association has research which shows, first, that many people with that disease suffer from severe mental health issues and, secondly, that in many parts of the country NHS mental health services refuse to give mental health treatment to those people. In addition to the work that his fellow Minister is requiring from NHS England, will the department look at the training of mental health staff so that they have the capability to support people with Huntingdon’s disease who have mental health issues?

Yes. The noble Lord has heard me say many times that I have really come to appreciate the Questions format for looking into areas that might otherwise not be seen. I thank the noble Lord and the Huntington’s Disease Association for bringing this to our attention. We have the steps in place but that is a good point about the training.

I declare an interest as a former Mental Health Act commissioner. Mental health seems to be very much the poor relative when it comes to resources and definitions in our health service. Does my noble friend not feel that we perhaps need to readdress matters such as guidelines for determining mental health? Many issues which arise are about pressures on people in their lives but do not necessarily come within the category of mental health. Would we not be better off having some clearer approach to this in future?

Our commitment is very much that mental health should be treated just as seriously as physical health conditions. I was delighted to announce today that on the NHS app we are launching mental health digital therapeutics, which are available for everyone to use. I recommend everyone tries them. The idea behind it all is that it is accessible to everyone at any time in their life.

My Lords, part of the problem of patients with Huntington’s chorea not being given proper treatment is that it is regarded as a neurodegenerative organic disease rather than what it is: it presents first with mental health symptoms. Guidelines are required, maybe from NICE, that clearly outline the patient journey of care for people with Huntington’s disease.

I have learned in the process of researching this that it is absolutely vital that commissioners understand what the patient pathway needs to be in each area. That is why we have tasked the NHS with a neuroscience transformation programme to set out those care pathways.

My Lords, we know that people living with Huntington’s disease, and their families, are faced with significant challenges throughout their lives. Many young people grow up in the shadow of the disease, are caring for their relative while worrying that they will get the disease themselves, and often face daunting choices around starting a family and genetic testing. All this underlines the need for mental health care and support for all the family. What steps are the Government taking to ensure that NHS mental health trusts take a whole-family approach to this vital issue?

The noble Baroness makes a very good point; it is a whole-family problem. The investment we are talking about, in allowing us to access 2 million extra mental health patients, is about making sure we have got the numbers. The digital therapeutics are another way we are making sure there is access. The specific point the noble Baroness makes about looking at the families of people with Huntington’s disease is a good point that I will take back.

My Lords, there is also a great deal of evidence that Huntington’s disease can be one of the conditions which can lead to dementia. It is a concern both in Huntington’s disease and dementia that there is a level of underreferral for mental health services. What specific action is being taken to tackle this issue, given that figures suggest the number of referrals for those suffering from Huntington’s disease and dementia to mental health services is minuscule compared with the level of demand?

The research from the Huntington’s Disease Association, albeit with a small sample size of only 100, suggests there is an issue here. That is why I spoke to Minister Whately about this just this morning. She is being very firm in terms of tasking the NHS to come back with a plan to make sure we get that diagnosis. We will not know until we see the situation across a larger sample size, but clearly it is something we need to work more on.

My Lords, the Huntington’s Disease Association is pressing the Government for a number of actions in its campaign “Mindful of Huntington’s”. Could I press the Minister on one of these: that there should be a care co-ordinator in each area to help manage the various professionals? Do the Government agree in principle with this approach? What specifically are they doing to work with integrated care boards for situations such as this, in which you need primary, secondary, mental health and social care to all work together?

The plan with the neuroscience transformation programme is to give that pathway to every ICS, which it should follow and commission to, to make sure that specific treatment is in place. It is a complex area, as we all know. Again, as I understand it, there are more than 7,000 rare conditions. I want to be open about the ability to put in place a specific individual care co-ordinator for every one of those, but we need to make sure that ICSs have enough skills in their locker—for want of a better word—so that they can recognise the situations and make sure they are commissioning to the plan.

My Lords, I declare my interests as chair of the Scottish Government’s neurological advisory committee and a trustee of the Neurological Alliance of Scotland. This is an issue not just for people with Huntington’s disease but for people with other neurodegenerative conditions, such as Parkinson’s. NICE standards for people with Parkinson’s recommend the prescription of Clozapine for hallucinations or delusions, but only psychiatrists are enabled to prescribe it; therefore, people with Parkinson’s do not have access to this treatment because neurologists cannot prescribe it. Will the Minister look at this? Maybe this is one way to ensure that people get the treatment they need.

Yes, I think is probably the best answer I can give in the circumstances. I will absolutely do that and will write to my noble friend.

My Lords, the draft major conditions strategy refers to mental health conditions and dementias so that should include diseases such as Huntington’s. The problem is—and I declare my interest in palliative care—that as these patients become terminally ill, they have complex physical and mental health needs, yet we know there are serious inequities in provision. Despite the Government’s own amendment to the Health and Care Act 2022, the draft strategy does not have a distinct section on palliative and end-of-life care. Why have the Government not made this a core, integrated part of the strategy for these major conditions when patients, such as the ones with Huntington’s, have really complex needs—and their families have complex needs too—particularly around the time of their death?

The noble Baroness is correct that they have complex needs and I know from personal experience, with both my mother and my father, the importance of end-of-life palliative care. I thank the noble Baroness for the warning of the question and have been assured that the integrated whole person care approach that the major conditions strategy sets out will include palliative care measures.

My Lords, the Minister will know that many of the people who suffer from this disease depend very heavily on the support of unpaid carers. I note that his fellow Minister is going to hold a cross-government round table on the needs of carers. Might that lead to the development of a national carers’ strategy?

I think and hope we have done quite a bit in this space already. Obviously, we have put in place measures to get carers’ some leave and some pay for what they do. I accept that they are a huge army of helpers and there is probably more that we need to be doing. I know that Minister Whately is right on the case.