World Down Syndrome Day – improving primary care for everyone

Euan Lawson portraitEuan Lawson is the Deputy Editor of the BJGP and BJGP Open.

Today is World Down Syndrome Day. It’s a celebration of some remarkable people and their families. They happen to be born with an extra chromosome.

The BJGP Open paper

BJGP Open today published a paper on the management of long-term conditions for adults with intelllectual disability. It is a mixed methods systematic review from Hanlon and colleagues in Glasgow. It makes for sobering reading.

It is known that adults with intellectual disabilities have higher morbidity and premature mortality compared with the general population. The paper took a look at the management of long-term conditions and identifies barriers and facilitators to management. This is a crucial area for people with intellectual disabilities. The days of institutions and long-stay NHS beds for even those with the most profound and severe disabilities are long gone and almost everyone lives in the community where they are dependent on primary care.

Key findings

They found a total of 52 studies. Adults with intellectual disabilities are less likely than the general population to receive screening and health promotion interventions. There is evidence that annual health checks can identify health needs and so help the management of long-term conditions. There are lots of barriers but there are also a fair few facilitators – those are the ones we, in primary care, should be looking at and planning action.

Here they are. Which of these could you tackle in your practice?

Access to primary care
  • Familiarity of carers: interpreting symptoms and when to present
  • Specifically amended invitations or letters
  • Accompanied to appointments
  • Familiarity with primary care staff
  • Training for reception/administrative staff
Consultation and communication
  • Familiarity with doctor/nurse
  • Presence of an advocate
  • Clear explanations, plain language
  • Additional time
  • Supported decision-making
  • Flexibility of primary care staff and environment
  • Carers reinforcing or following up outcomes
Disease management
  • Plain language resources and information
  • Clear routines
  • Supportive housing; structure, staff support
  • Practical advice (e.g. dietary)
  • Specific training for carers and staff
  • Promoting confidence and independence

This list is a rich source of actions to address barriers. You presumably have a register in your practice. It’s a QOF indicator after all. But what’s the point having it if it’s not used. Are your patients with intellectual disabilities getting offered screening and health promotion? Call ’em in. Have a chat. What about staff training? Is there a system to offer longer appointments to people with intellectual disabilities?

NICE found two potential QOF indicators related to intellectual disabilities – the first is that practices should have a register. As mentioned, that’s still in QOF. The second is that people with Down syndrome should have a regular TSH. If nothing else, running a search on the computer to see if people with Down syndrome have had their thyroid checked is a simple quality improvement activity we can all do.

A short video

This is a fantastic video.

An opportunity for doctors

Everyone knows that general practice is hard pressed. I’d offer the suggestion that the management of people with intellectual disabilities, including people with Down syndrome, is an enormous opportunity for us in primary care.

It’s a chance to make a huge, meaningful difference to a vulnerable group of patients. A chance to push back when the system is creaking and a devil-take-the-hindmost approach to healthcare is the unintended consequence. Reducing health inequalities is something we can all support. Working to improve healthcare for people with Down Syndrome is the kind of meaningful work that might help re-kindle your spirit and the enthusiasm in any primary care team.



Featured photo: Nathan Anderson

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