A practice in the Isle of Wight area

3. Ms B complaints a GP practice on the Isle of Wight did not adequately assess her son for inclusion on to the Learning Disability Register at the Practice.

4. Ms B told us the Practice did not consult with other professionals who work with her son to make an informed decision.

5. Ms B informed us her son has not been able to access an annual health check to assess his medical needs and has not had reasonable adjustments flagged on his file. Ms B has had to spend additional time to overcome another obstacle to accessing the care her son is entitled to.

6. As an outcome to her complaint Ms B wants the Practice to reassess her son, service improvement from the Practice for the benefit of her son and other patients and the findings to be shared more widely for the improvement of access for all who need it.

7. Ms B complains on behalf of her son who has had an autism diagnosis from the age of four. He receives the highest level of disability living allowance, is on an Educational Health and Care Plan (EHCP) and has one-to-one teaching at school from a specialist educator.

8. On 10 February 2025 Ms B booked an appointment for her son with the GP. Part of the appointment was to have her son assessed for inclusion on the Learning Disability Register.

9. The Mencap website states ‘The Learning Disability Register is for everyone with a learning disability. It’s a list kept by local GP surgeries to make sure their patients with a learning disability get the right support and reasonable adjustments. People on the learning disability register are offered an annual health check from the age of 14 years onwards’.

10. The Practice declined to place Ms B’s son on the register because he had not a formal diagnosis of a learning disability from a qualified clinician.

11. The Practice’s final response was it had asked for advice from other colleagues, who had agreed a formal diagnosis was required for inclusion on to the Learning Disability Register.

Issue – The Practice did not correctly assess Ms B’s son

14. To decide if we should conduct a detailed investigation into a complaint, we first consider whether there are any indications something went wrong with the service provided by the organisation. If so, we then explore if the organisation would be willing to take further steps to put this right and resolve the complaint.

15. Ms B arranged an appointment at the Practice when her son reached 14 years of age. The appointment was to confirm access to her son’s medical notes as his main carer, to register her son on the Learning Disability Register and to familiarise her son with the Practice and GP.

16. Ms B told us when she received the letter from the Practice saying they would not include her son on the Disability Learning register, she was frustrated and concerned for the impact this decision would have on her son’s access to medical services.

17. Ms B informed us she works within the Learning Disability and Autism Programme for an NHS Trust and understands the increased risks for patients with a learning disability who are unable to access medical services. Ms B told us as a parent she feels it is very important to plan for her son’s future, and access for her son would be improved by becoming familiar with the Practice and having reasonable adjustments in place. We can see Ms B experienced significant frustration and distress on receipt of the letter from the Practice.

18. The medical records state Ms B and her son attended the appointment and records the requests made by Ms B. The records state Ms B’s son does not have the capacity to make individual decisions about his health care, and the Practice supported Ms B in having access to his notes. The records state the Practice informed Ms B a confirmed diagnosis by a specialist was required for a patient to be added to the Learning Disability Register. The records show Ms B challenged this understanding and the Practice agreed to take further advice.

19. The LDR guidance states the Learning Disability Register is for babies, children, young people and adults who have a learning disability and are registered at their local GP practice. The register lets the health staff at the GP practice know a person has a learning disability and the person may need reasonable adjustments. In addition, the person will be able to access an Annual Health Check from age 14, a Health Action Plan and an NHS flu vaccine. The main carer should also be registered and be able to support the person to attend appointments and talk to professionals on the person’s behalf.

20. The LDR guidance goes on to say a GP can make an assessment about whether to register a person on the Learning Disability Register and this can be done at any age. A GP can consider if the person is in receipt of additional support, for example an Education, Health Care Plan (EHCP) or if the person attends a special school. If the GP is unable to decide, the GP may ask for help from other health professionals.

21. The NHS Policy provides guidance to help a GP assess a patient. It includes a checklist known as an ‘Inclusion Tool’.

22. The medical records do not show the Practice made any use of the ‘Inclusion Tool’ to assess Ms B’s son or that it contacted any other health professional with knowledge of Ms B’s son.

23. We explained our findings to the Practice and asked if it would consider reviewing Ms B’s son’s assessment in line with the guidance.

24. The Practice reviewed the information provided and are willing to assess Ms B’s son in line with the Policy.

Conclusion

25. We can see the Practice’s proposal demonstrates understanding, learning and a willingness to use the Policy to make an informed assessment.

26. We consider the actions the Practice have proposed will remedy the complaint for Ms B and are in line with her wishes for service improvement. Ms B has also asked for wider learning from her complaint and is reassured that our decision will be published.

27. We thank Ms B for bringing this complaint to us.

1. We have carefully considered Ms B’s complaint about the Practice. We have decided not to take further action on her complaint because the Practice have agreed a resolution for Ms B's complaint.

2. We thank Ms B for bringing this complaint to us and telling us about her experience. We are sorry to hear of the frustration and distress Ms B felt when trying to have her son added to the Learning Disabilities Register.