The two reports carried out by the British Academy of Audiology are incredibly damning. The Lothian audiology team felt everything was going well, but in fact the basic knowledge of how to test children for deafness was completely lacking. In this blog I’m going to discuss seven issues which I think are important. Let’s have a public debate about it. The report itself was not very accessible. The plain English, community languages and British Sign Language version in this blog are designed as a way in to a public debate. Parents of deaf children and members of the deaf community will have a lot to say about what happens next.
Out of date practices
It seems that the NHS Lothian paediatric audiology department was out of date, not working professionally, insular and even arrogant in the way they carried on their work. The team didn’t know how to test, how to choose the right test, or how to interpret test results. They didn’t seem to know how serious their job was – early diagnosis means an early start with spoken English and British Sign Language is possible, much reducing later language difficulties. They told parents not to worry for years in many cases, sometimes saying that children were hearing and then became deaf. The head of department bears a lot of responsibility, as does the audiologist who performed the ABR tests so badly. What is going to happen to these members of staff? Is retraining enough? We need to see much better joint working with speech and language therapists, teachers of deaf children and educational audiologists who know more about child language development.
Many more deaf children are affected
The audit only looked at the children most likely to have been affected, but many children who are younger than ten and have permanent deafness have not yet been reviewed. There are at least 700 more who have not been reviewed. What about the Did Not Attend children? We know from safeguarding research that Did Not Attend appointments often relate to families living under stress and in crisis. Language delay for deaf children living on a low income has particularly poor outcomes. Will they be followed up? When?
On-time diagnosis: 1-2-3 month targets
Trust between parents and the Lothian audiology clinic is now at an all-time low. How will the NHS rebuild trust? Being more open about timelines of diagnosis and referral would help. I would suggest that for all Health Boards in Scotland we see advertised timelines and rates for completing the newborn screen by 1 month, doing audiological assessments and aiding where relevant by 2 months, and when regular support for the family starts, which should be at least by 3 months (see the JCIH 2019 guidelines). These are international benchmarks. Regular support for the family could be speech and language therapy, a teacher of deaf children, and/or a deaf signing role model. The four Lothian authorities shared an educational audiologist until 10 years ago. This post is needed again, and urgently. An educational audiologist is a teacher of deaf children who has additional audiology training. The data about timely progression through diagnosis and into early support for families should be open and publicly available on the websites of the health boards and the local authority services for deaf children. What percentage of deaf babies referred through newborn screening meet the 1-2-3 month benchmarks? We need to be able to find that easily on each Health Board and Local Authority service for deaf children website.
The wider picture
Is the situation any better in the rest of Scotland? I would think probably not. The peer-review system did not work with NHS Lothian. The visiting team took notes, but their final grades seem to have been moved up, and the results were not acted on. We need a more rigorous system of quality assurance which includes actual inspection of practical skills for all audiologists, particularly those trained before 2005 when newborn hearing screening was introduced. Inspection teams should always include an independent paediatric audiologist from a highly recognised team. Representatives of parents and teachers of deaf children should also be on the peer review teams and a deaf representative from a deaf organisation such as Deaf Action or the British Deaf Association. Reports should be followed up at the highest level of the Health Boards across Scotland. Because we can’t rely on the audiology services yet, I think Scotland should reintroduce the preschool hearing screen at age four and improve training for Health Visitors in assessing spoken language at the checks they do at 27 months old. Just as with the newborn hearing screen where every Health Board decides its own procedures, the same happens with the Health Visitors’ tests on all children. This inconsistency between NHS Health boards leads to low standards and allows no way of measuring success across Scotland.
British Sign Language is not yet an option
After this scandal NHS Lothian says that ‘specialist support’ may be needed with the late diagnosed children. By this they suggest that BSL may be needed – as a last resort. From this report we know that at least 82 deaf children were late diagnosed. That is, they will have experienced language delay and deprivation. There is no system in the Lothians for introducing a secure way of providing every deaf child and their families with a fluent language – BSL. We have a BSL Act in Scotland, but it has little impact on NHS Scotland. There is no infrastructure for parents to try several approaches to language development at the same time, though this happens in other places such as Australia, Ireland, and Colorado. This is a government issue which also involves education and health. Why don’t we have more options for parents? BSL is not a last resort but should be a possibility for any deaf child whose family ask for it. Our health and education systems should be working together to end language deprivation.
Audiologists – registration chaos
The qualifications and skills of some paediatric audiologists in Scotland are concerning. There is a UK registration for health staff scheme called the Registration Council for Clinical Physiologists (RCCP). But registration is voluntary for audiologists. There is another organisation, the Healthcare and Professions Council (HCPC). This professional body checks the qualifications and continuing professional development (CPD) of many healthcare professionals, such as Speech and Language Therapists. But audiologists are not a category for the HPCP. Some of the practitioners on the RCCP register completed their training long ago and have not had their practical assessment skills rechecked. Audiologists who have been working for six years or more can apply to the RCCP on an equivalent registration route. They provide a reference from a qualified audiologist. So we can’t be sure about the child audiology clinical skills of audiologists who qualified some years ago. We need to see more transparency about professional registration and how these advanced practical audiology skills are checked. Heads of paediatric audiology departments and senior audiologists should have some up-to-date evidence of advanced clinical practice with paediatric audiology assessment and direct inspection rather than self-assessed or peer-reviewed evidence. They must be able to achieve the Scottish Paediatric Audiology Standards to an excellent level.
Six months later – what action has been taken?
The report from the BAA was published in early December. Now in mid-June, what has happened to support these children? The NHS has apologised in person to some of the families affected and sent detailed notes to the parents afterwards explaining what went wrong. This is a first step. But the NHS Health board has not passed on details of the families affected to the five local authority services for deaf children. Audiology departments routinely ask parents to give permission to pass on all news of audiology appointments and changes to hearing aid settings. Teachers of deaf children work very closely with audiology using this shared information. So why six months on has the NHS Lothian Health board not passed on these details? Are they not aware how critical timing is for the establishment of a first fluent language? The Scottish Government has not put in additional speech and language therapists. There are no plans yet revealed to monitor the spoken and sign language development of the affected deaf children regularly. There is no news of additional teachers of deaf children to be recruited to the five authorities. The only good news is that one authority, Edinburgh, has advertised a new part-time post for a BSL teacher and the job description suggests the teacher will also teach families BSL. When a court case comes, in a few years’ time, how will these professionals feel then looking back at the inaction after the reports were published? Joint action between Health and Education is imperative straight away, and serious commitment from the Scottish Government to support these children’s language development.
For families whose children have had a very late diagnosis, parents will need more support, more regular home visits to catch up all that missed information they didn’t get from visiting teachers of deaf children in the years from birth to school age. Will the government provide extra teachers of deaf children, BSL tutors for children and families, more specialist speech and language therapists and an educational audiologist for these authorities? Will the NHS and registration bodies like RCCP and HCPC put in place a more transparent system for checking the clinical skills of paediatric audiologists? There is a lot of work to do. Deaf children’s lives should not be damaged any further because of failings in the system.