NHS England now requires clinical commissioning groups to offer access to psychological therapies, for adults with long term conditions and medically unexplained symptoms. According to the new NICE impact report on mental health, in a bid to ‘make access to [psychological therapies] for long term conditions a reality’, NICE has commissioned a pathway that includes access and waiting time standards.
People with rare and undiagnosed conditions shared their mental health experiences with us last year for our mental health report. In our report we called for rare disease health services to include mental health support, so the news from NICE is a welcome step in the right direction. We also called for tailored provision, so that people affected by rare diseases can be offered appropriate support rather than a one-size-fits-all approach. We are pleased that this critical aspect is highlighted as good practice in the NICE impact report.
We hope in future that such support will be extended to carers of people with rare and undiagnosed conditions.
It is clear that living with a rare disease can pose substantial emotional challenges – 70% of respondents to our survey said they have felt at breaking point. This new requirement for Clinical Commissioning Groups should mean that anyone who feels that they are struggling, or could do with some support, can be reassured that their GP should be able to more easily arrange a referral.
Another option is to use the online self-referral system.
Dr Jayne Spink, Chief Executive of Genetic Alliance UK, said:
‘We know from talking to our members and supporters that many people living with a rare, genetic or undiagnosed condition face anxiety, stress, emotional exhaustion and suicidal thoughts. This can be directly because of their condition, or because of the challenges associated with managing their condition.
Our research also found that primary care is not always able to deliver the support needed by the community, so we hope this commitment will improve the number of positive referrals and appropriate care.’