Integrated Care Northamptonshire

3. Mr A complains the ICB has failed to comply with the agreed continuing healthcare (CHC) as it has removed passenger assistance for his son, O, when he travels to and from the day centre.

4. Mr A says without the passenger assistance his son comes homes anxious, has outbursts and has displayed violent behaviour. It has also affected his mental health. He says O cannot deal with change as day centre staff are frequently late to collect O, make last minute changes, drive on the motorway and have changed drivers too many times.

5. As an outcome, Mr A would like the ICB to give O passenger assistance as agreed in the care package or to carry out a review with his involvement.

6. In February 2021, the ICB did an annual review. O was funded for five days a week at a National Autistic Society (NAS) day centre with transport and a passenger assistant and eight nights a month of respite care. O was shielding during the COVID-19 pandemic and the package of care was to continue as soon as shielding was lifted.

7. On 1 March 2021, a CHC nurse practitioner completed a Personal Health Budget (PHB) review on O. It noted that O displays severe behaviour when his routine changes and saves it all for when he gets home.

8. On 24 May, O returned to his day centre on a phased return attending three days a week with a full-time return planned for 7 June.

9. On 3 June, the brokage team contacted Mr A and said it would no longer provide funding for a passenger assistant as it was not needed. Mr A disagreed with the decision and raised a complaint.

10. In August, the ICB made enquires with the day centre and the transport provider. Both organisations stated an escort was not necessary and that it added to O’s anxieties.

11. In September, Mr A received a complaint response which stated transport without an escort would best meet O’s needs. Mr A wrote back to the ICB advising it had not considered the risk to his son on removing the transport escort. O’s GP also provided evidence to the ICB asking for a review to be carried out. The ICB maintained its position that O did not need a passenger assistant.

16. Before we decide if we should do a detailed investigation of a complaint, we look at whether there are signs the events complained about had a negative effect which the ICB has not put right. Having done so we have found the ICB agreed to put right the impact caused to Mr A and his family. We explain our decision below.

17. A PHB is an amount of money to support the health and wellbeing needs of an eligible person. It is planned and agreed between the individual, or their representative, and the local ICB. The amount of money in the PHB is based on their personalised care and support plan. This plan helps people to identify their health and wellbeing outcomes with the ICB and sets out how the budget will be spent to help them reach their goals and keep them healthy and safe.

18. There are three types of PHB: a direct payment, a notional payment and third-party budget. O’s PHB is delivered by a notional budget. This is where the individual knows how much money is available for their assessed health and wellbeing needs, but the ICB holds the budget and uses it to secure services in the care and support plan.

19. O has been diagnosed with autism, epilepsy, hydrocephalus (excess fluid in the brain that can affect brain tissue and function), microadenoma (a small non-cancerous tumour that forms in the pituitary gland), chronic lung disease and a learning disability. He needs routine and structure that is predictable. He experiences anxiety, especially when there is a change to his routine, which escalates to challenging behaviour.

20. Mr A told us before the COVID-19 pandemic, O was transported by a private cab company to and from the day centre with a passenger assistant. This worked for O because of his specific needs. He liked to know who his driver would be and liked to take the same route to the day centre.

21. After COVID-19 restrictions were removed, the ICB changed O’s package. The staff at the day centre were transporting O and this was without a passenger assistant. Mr A told us his son would keep his feelings of anxiety inside until he got home and then have violent outburst. Mr A complains the ICB did not consult with him or his son’s GP before removing the passenger assistance and did not do a risk assessment.

22. The National Framework sets out the principles and processes for deciding eligibility. The ICB did an annual review of O’s care needs using the National Framework 2018. There was no issue with O’s eligibility for CHC-funded care.

23. NICE guidance CG142 sets out what to consider when doing a risk assessment on a person with autism.

24. In the statement from the transport agency, they commented that O likes familiarity, feeling safe and looks for the landmarks on the same route.

25. The ICB also made enquiries with the NAS day centre. It said it did not feel O needed a passenger assistant. It said he becomes anxious and worried about who is going to collect him from the centre, but he does not have any anxiety when in the vehicle.

26. In the care plan it says O did not understand the need to isolate because of the COVID-19 pandemic and his routine was broken because he could not go to the day centre. In October 2020, when he returned it was for a very short period before he could not go. Our adviser explained this would have been very disruptive for a person with autism who relies on schedule and routine to keep them calm.

27. We have seen further evidence in the ICB records which shows O relied on routine. For example:

• section 1 says O ‘requires routine and structure to his days; transition, back to the day centre following the extended break due to COVID 19; may struggle to transition back; supported 1:1’

• section 2.2 says ‘O is reliant on the support of others to stay safe whilst at the Autism Centre’.

28. In the review document completed on 1 March 2021 it noted O did not understand COVID-19 or his vulnerability.

29. We can see O’s usual routine was interrupted twice due to the COVID-19 pandemic. He then faced another change when his passenger assistant was no longer there.

30. We found issues that none of the organisations (ICB, NAS and transport provider) had considered. They had not considered whether the presence of the passenger assistant in the vehicle was the reason why O was calm when travelling. The records say the transport provider had been providing a service since 2018 and never had any problems in the car, but up until that point O always had a passenger assistant.

31. In the transport provider statement, it said the drivers are first aid certified and have completed passenger assistance training. But it had not considered that the driver is in control of the vehicle and could become distracted by a seizure and lose control, endangering themselves, O and others.

32. O has been prescribed anticonvulsant therapy for epilepsy. He has tonic-clonic seizures (where you lose consciousness, your body goes stiff and your limbs jerk about) and absence seizures (where you lose awareness of your surroundings). He is prescribed rescue medication and needs monitoring and possible paramedic attention.

33. The transport provider said there were times when O was quiet in the car and would not engage or speak and they would leave him to his thoughts. Our adviser told us these might be times when O is having an absence seizure. The evidence in the ICB records, the day centre and transport provider confirmed O did not respond to change easily and the carers needed to prepare him when there was a change.

34. Our adviser said none of the agencies had considered the consequences of O being alone in the vehicle with only the driver if he had an epileptic seizure. The evidence shows O has absence seizures and while his tonic-clonic seizures were not frequent it was unknown when he would have another. This would have been a risk to the safety of the driver, O and other road users because the driver would have to stop the vehicle to deal with the seizure.

35. Risk management in health and social care is a way of identifying, assessing, prioritising and controlling risks across an organisation. It is an important part of good governance and the ability to provide safe and effective care and support to people who use health and social care services. Risk management is a continuous, proactive process by an organisation to avoid harm or loss.

36. A risk assessment would have determined whether the risk was likely and what level the risk was (high, medium or low). Everyone’s views should have been considered.

37. Our adviser told us the ICB should have carried out a risk assessment before removing the passenger assistance, even though the transport provider and the NAS day centre said O could travel in the vehicle alone. Before the COVID-19 pandemic, a passenger assistant had always been there. There is no evidence the ICB tried and tested O travelling without a passenger assistant.

38. We found signs of a failing. Mr A told us he wants the ICB to do a risk assessment because he does not believe the passenger assistant should have been removed.

39. Our ‘Principles for Remedy’ say where maladministration (fault) or poor service has led to injustice or hardship, public bodies should try to return the complainant to the position they would have been in otherwise. We looked to see if a resolution could be achieved on this case.

40. On 24 April 2023, we contacted the ICB setting out our findings that it had not considered the risk to O before deciding to remove the passenger assistant. We proposed to the ICB to carry out a risk assessment with involvement from the family and GP. On 11 May, the ICB told us it had completed a risk assessment and was considering the next step. We updated Mr A on the ICB’s position. He told us he was not involved in any risk assessment but the ICB had contacted him to advise it was getting quotes from transport companies.

41. On 12 July 2023, the ICB told us it had met with O’s family to discuss requirements and developed a plan that was waiting for financial sign-off. Mr A told us the ICB had contacted him to ask which transport company he wanted to go with. He told the ICB he wanted the same company as before and is currently waiting for the decision to be finalised.

42. Having considered the information from Mr A and the ICB, a risk assessment was carried out and the decision has been reversed to reinstate the passenger assistant for O. We spoke to Mr A and told him that, because we have achieved the outcome he wanted, there is no further action for us to take. The ICB is finding a company to provide this service.

43. We are pleased that O will be getting the care he needs. We thank Mr A for bringing his complaint to us for consideration.

1. We have carefully considered Mr A’s complaint made on behalf of his son, O, about Integrated Care Northamptonshire (the ICB). We recognise how important Mr A’s complaint is to him. We understand the process to provide continuous care for his son has been ongoing for a long time and has been difficult for Mr A and his family.

2. We found signs of a failing as the ICB removed the passenger assistant without doing a risk assessment for O. We are pleased to hear that since making his complaint, the ICB did a risk assessment and is finding a company to provide this service.