The Sub-committee heard from two residents from the same family with learning difficulties. They both gave lived experiences of poor service received from healthcare professionals. They stated that Autism is a spectrum disorder that impairs cognition, and reasonable adjustments are not made when trying to access services. Some healthcare professionals and reception staff do not slow down speech, clarify points nor allow time for residents to comprehend information or answer questions. There are times when staff become impatient and raise their voice. This will exacerbate symptoms and cause unnecessary anxiety for the resident, as appointments can no longer be made online.

Real, Tower Hamlets' largest Disabled People's Organisation, assisted in changing GP's to resolve issues. However, further complications arose when trying to obtain wheelchair access for their mother, which took 9 months to resolve. Access to the GP was not provided and messages were not initially returned. When the GP did call, they were rude and  unprofessional, leaving the patient feeling frightened. Hospital staff can also be unsympathetic in writing down appointment times and explaining processes clearly. Assistance was provided from a temporary support worker, although this took three months to resolve.

Members were also informed that waiting lists for counselling appointments are high, which leads to further anxiety. Healthcare professionals were reminded that disabilities are not always visible and consideration should be made for patients to choose GP’s. Allowances should be made to hold double appointments in person, and reception staff should also be trained to show more empathy towards patients as they are front line staff.

The Chair thanked the residents for their feedback and introduced Jo-Ann Sheldon, Head of Primary Care Commissiong and Dr Roberto Tamsanguan, Clinical Director, Primary Care to give an overview on health service improvement plans for disabled residents.

Primary Care Presentation

Ms Sheldon updated the sub-committee on the Care Quality Commission's (CQC) nine GP requirements to receive a satisfactory rating. Practices are inspected  every five years and details of the Disability Discrimination Act 1995, which mandates all practices to make reasonable adjustments to provide access for disabled residents were outlined. New buildings all conform to the Act and there are plans to refurbish older sites. All practices can apply for a London Improvement grant, although funding is limited.

Members were informed of the systems in place to address patients' needs, particularly the portal which provides information for North East London (NEL) practices to best support patients, medical information systems and reasonable adjustment flags. The Universal Care Plans (UCP) are also available, to ensure residents with learning disabilities receive full support in order to navigate the process, and a clinical lead is also on hand to give further advice.

All borough practices have a digitally excluded patient policy, reviewed annually and letters with leaflets are sent to residents over the age of 14. These are co-produced with young people, informing them how to access care services. Details include a culturally appropriate tool kit and a QR code to easily access information.

Ms Sheldon then updated the sub-committee on the Oliver McGowan mandatory learning disability and autism training, which will be provided throughout the healthcare sector, ensuring practitioners can adequately support patients. Two practices in the borough have taken part in the Embedding Disability Awareness Pilot (EDAP) and will address many of the issues raised by residents with concerns about poor service received. The NEL now manage all complaints and are reviewing processes to be more easily accessible.

Sue Denning, Public Health Localities Manager, stated that Tower Hamlets Training Hub, will be presenting a Disabilities Competency Programme next month. The programme, co-produced with adults with disabilities and Real, is preparing a tool kit incorporating the best practice guidance and will include lived experience from residents. This work has been conducted for three years, and additional training and ongoing discussions with the Primary Care Network (PCN) will continue to ensure adequate adjustments are made.

Further to  questions from the sub-committee, Jo-Ann Sheldon, Dr Roberto Tamsanguan and Sue Denning;

·       Explained that further details on healthcare initiatives for access to GP practices for patients, specifically for vulnerable or elderly residents, can be brought back to the sub-committee for review. For access on specific sites, residents are recommended to contact the practice management team at that particular practice.

·       Confirmed the two GP practices trialling the EDAP programme are The Tredegar Practice and St Pauls Way Medical Centre.  Disability Awareness training will be offered through the NEL Training Hub with the GP Care group, across all PCNs and include a wide range of staff.

·       Explained that most practices are managed by GP partners who are responsible for recruiting reception staff. Further details on measures to support the development of receptionists will be discussed outside of this meeting.

Royal London and Mile End Hospitals

Fiona Peskett, Director of Strategy and Integration, BARTS NHS Health Trust, gave an overview of disability access to both the Royal London and Mile End hospitals. The sub-committee were informed that The Royal London adheres to Part M building regulations, and BARTS Health clinical planners ensures the building conforms to accessibility requirements.

A website for deaf and hard of hearing patients has been established, all departments have access to a hearing loop that staff are trained to use, and a web chat system is available for outpatient appointments. All staff are required to undertake staff equality and diversity training and are also offered dementia and deafness training.

Ms Peskett then noted that both hospitals have a learning disability nurse and ongoing reviews are conducted to ensure the needs of borough residents are met. ‘Access Able’ allows patient accessibility for all five hospital site maps and access links are available on the BARTS Trust website. Feedback from service users are continually monitored and for those who do not use digital media, appointment reminder letters are routinely sent out.

Further to questions from the sub-committee, Fiona Peskett;

·       Confirmed that a written brief on web chat analytics will be made available to the sub-committee for the next meeting.

·       Confirmed that a written brief in regards to equality and diversity and mandatory healthcare training for specific disabilities will be made available to the sub-committee for the next meeting.

·       Clarified that BSL interpreters are available during working hours and an online service is accessible out of hours.

·       Confirmed that details on whether the NHS accessible information standards 2016 is now available in all BARTS Trusts will be provided.

·       Confirmed that further details on theLearning Disability Nurse’s hours of service and confirmation on mapping patients accessibility relates to visible or invisible disabilities will be brought back to the sub-committee for the next meeting.

Disabled People and Primary Care

Jack Gilbert, the Chief Executive Officer for Real DPO, presented an overview of the organisations' community engagement and advocacy work with disabled residents. Real have collaborated with patients with varying disabilities and from different backgrounds, who gave lived experience of difficulties in accessing primary care and community health services in the borough. Many people experience long-term impairments during their working life and GP’s should be adapting their care. Currently there is no transferable way that patients access requirements are logged. The ICB should be informed so that concerns can be referred to NHS England to resolve.

Real are currently working with Barking, Havering and Redbridgehospital trusts  to combat access concerns for disabled people. A disability action plan, an assessment tool and a change management training program have all been developed, to assist primary care commissioning leads in prioritising and extending disability access, particularly in older locations and community pharmacies.

Sub-committee Members heard that consideration should be made for the action plan to be  implemented within primary care, local authorities and not just Tower Hamlets. Further workstreams have been undertaken in conjunction with NEL ICB and disabled residents to improve accessible communications. It was noted that although social care independent living costs at home will no longer be charged, assessments for services and access to appropriate levels of home support will be more difficult to obtain.

Apasen Disabled Peoples Network

Subhiksha Manoj, Communications & Network Officer, and Adegoke Ukunade, Project Manager, Apasen, who provide home and community care services, respite for disabled residents and training for carers,  presented an overview of the organisation and feedback from service users and their primary carers.

Patient concerns included long waiting times for GP appointments, sometimes up to three weeks, language issues resulting in miscommunication and frustration and carers who call on the patients behalf stated they were not considered suitable patient representatives, as they are not the primary carer.

Ms Manoj informed the sub-committee that there is a lack of understanding from patients on the meaning of reasonable adjustments. Consideration for a campaign should be made to raise awareness, as well as supporting initiatives led by the Real Islam Foundation, Deaf Plus and other organisations.

Further research is required by healthcare providers to ensure reasonable adjustments are made, and supporting local training programs led by adults with disabilities is vital in understanding the issues faced.

Further to questions from the sub-committee;Subhiksha Manoj and Adegoke Ukunade;

·       Confirmed that all carers are required to hold a CARE certificate. A comprehensive induction and in-house training is provided before they start work. Refresher training is also given and an Employee Assistance Scheme allows them to speak to a professional when required.

·       Confirmed that the majority of carers employed are UK Nationals and professionally qualified nurses.

RESOLVED that;

1.    Details on healthcare initiatives for access to GP practices for patients, specifically for vulnerable or elderly residents to be brought back to the sub-committee for the next meeting.

2.    A written brief on web chat analytics to be brought back to the sub-committee for the next meeting.

3.    A written brief in regards to equality and diversity and mandatory healthcare training for specific fields to be brought back to the sub-committee for the next meeting.

4.    Details on the Learning Disability Nurse’s hours of service and confirmation on mapping patients accessibility relates to visible or invisible disabilities to be brought back to the sub-committee for the next meeting.

5.    The presentations be noted.