INTRODUCTION

  Cheshire and Wirral partnership trust (CWPNT) learning disabilities division wish to submit the following evidence to the JCHR for consideration in their investigation.

  In order to ensure as many people as possible were aware of the call for evidence and could contribute to it we circulated both the easy read version and full document of the call for evidence via joint partnership boards; all CWPNT teams and in patient facilities and to advocacy groups, learning disability commissioning managers and the learning disabilities multi agency provider forums. This was in the hope that as many people as possible residing in Cheshire and Wirral would respond. Hopefully there will be other responses submitted from individuals and / or organisations across Cheshire and Wirral to the committee in due course.

  What follows is evidence collated from within Cheshire and Wirral partnership trust drawn from a number of sources, namely:

—    Information from service user consultations completed over the past 18 months and the more recent Cornwall action plan consultation (ongoing)

—    Staff views on what they see in day to day practice

—    Direct anonomised case evidence

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  This document will draw your attention firstly to areas of best practice we feel would be useful to share with others with regards to how we are aiming to safeguard the human rights of people with learning disabilities in relation to their health needs when in contact with CWPNT. This evidence has been drawn from the service user consultation sessions / documentation and current practice within the learning disabilities division.

  Next the document will move on to outline some of the wider primary / secondary and social care issues we feel are still major problems for people with disabilities and impact on their human rights. This section will be illustrated with evidence from the direct experiences of people with learning disabilities and clinicians in Cheshire & Wirral. We will also indicate where there are pockets of good practice which are going some way to resolving these issues in some instances.

  Finally the paper will make some recommendations as to what people with learning disabilities, their carers and local clinicians felt would make the biggest impact on the human rights issue in learning disabilities within a health context.

Best practice initiatives within CWPNT which demonstrate a commitment to promoting the human rights of people with learning disabilities

—    Employment of a consultant nurse and health facilitators to lead on reducing health inequalities and improving health access for people with learning disabilities across Cheshire and Wirral. This virtual team work closely with people with disabilities, their families, primary / secondary care and provider agencies to improve local health care provision by:

—    Development of a managed clinical network on health access and inequalities. Includes the people above plus other therapists and people from primary / secondary care. Network is responsible for project development around problematic issues and more proactive work. Eg dementia pathway development group; know your numbers national blood pressure campaign group

—    Employment of a consultation and information worker within the learning disabilities service in Cheshire and Wirral partnership trust. Their role is to lead consultations with clients on a range of issues and lead on ensuring our information is in accessible formats. The last 18 months has seen large scale consultations on the following topics: reconfiguration of in patient services; views on respite services; Cornwall action plan; views on health via use of patient stories model; experiences in mainstream mental health services (just started). In addition the post holder helps with the design of evaluation & feedback processes so that people with disabilities can express their views on any training they have received.

—    Development of best practice consultation guidelines

—    Investment in ensuring full involvement of service users in staff recruitment at all levels. Also developed best practice guidance on how to do this

—    Patient & public involvement service (PPI): There has been substantial investment across the trust in PPI. The learning disabilities consultation & information worker has worked closely with this department to ensure creative ways of involving people with learning disabilities in the trusts business other than merely sitting on committees. This has included learning disabilities involvement in foundation trust status and membership; ensuring ways people with learning disabilities can be paid for their contributions to consultations outside of the committees and working parties arena (eg by taking consultations out to the person if they are unable to cope with a meetings setting etc) and redesigning all paperwork / claims forms to be accessible to people with disabilities. Currently working with the trust IT department and social services on possibility of a learning disability website as the trust & borough councils corporate web page style is not accessible to people with learning disabilities

—    There has been major progress around people with learning disabilities being able to access trust wide services based on clinical need (ie adult and older peoples mental health services; drugs & alcohol services and CAMH's ) by the development of closer working relationships / joint working and ensuring learning disability diagnosis does not result in exclusion from services

—    Foundation trust contracts are currently being finalised and work has been undertaken to focus on inclusion and ensure there is no exclusion on the grounds of disability

—    All learning disability inpatient facilities have an accessible service user induction pack which is gone through with people on admission and revisited at intervals throughout their stay. (includes things such as where to find things on the unit; how money is looked after; named nurse; what to expect while you are here; your rights etc)

—    Introduction in all areas of picture boards of who's who staff wise and adaptation of all out patient appointment letters to include photos of who they will be seeing and the building they will be going to. Plus all clients offered choice of 3 dates for their out patient appointments

—    CWPNT community team care planning changed to focus on empowering the person to take ownership of their lives / meetings. Use of the "my care planning meeting" process whereby the person sets the agenda for their meeting and pre work is done on looking at what they would like to say, who they want there etc

—    In patient areas and supported living schemes have consultation sessions running regularly for in patients and tenants to comment on the services they receive and any changes they would like to see made. Regular progress is then fed back via meetings and through the talk back scheme within the trust

—    Wirral Health Action Group (HAG): formal working group PCT led and includes representation from advocates; CWPNT; secondary care; social services; primary care & provider agencies. Focus is to lead on health developments for people with learning disabilities in Wirral and ensure PCT public health & health promotion departments look at the access and discrimination issues for people with learning disabilities. Has an action plan which is signed up to by senior officials within the PCT and partnership agencies.

Primary / secondary & social care issues impinging on the human rights of people with learning disabilities

  Despite all of the above and the fact that much has been done nationally and regionally to ensure the rights of people with learning disabilities are upheld, there are still a number of cases where one could say a persons human rights have not been upheld, especially in the areas of unjustified discrimination and poor medical care due to diagnostic overshadowing and disability blindness.

  The areas we would like to specifically highlight in this section are:

  1) continuing care processes

  2) diagnostic overshadowing / disability blindness and the lack of skills and knowledge within NHS staff and care agencies to be able to meet the health needs of people with learning disabilities

  3) transition from children's to adult services

  4) people fit for discharge within in patient learning disability services but have no where to go which continues to impinge on their day to day freedoms / lifestyles and denies them the benefits they would have been afforded had they been discharged ( benefits trap)

  5) national lack of accessible information and investment in developing such information

  (1) continuing health care process: people with learning disabilities are not fully enjoying their rights in this area due to unjust discrimination on the grounds of their disability

  There is evidence to suggest that people with learning disabilities are not able to access continuing care as swiftly or indeed to the same degree as other citizens. This is due in the main to there being confusion as to the relationship between continuing health care and the learning disability joint commissioning arrangements where they exist. A number of cases dealt with recently have been unduly delayed due to the need for deliberations on whether learning disability clients should go through the continuing care process as other clients do or whether the joint commissioning arrangements pooled budgets is the appropriate route. This could at times negate the rights of people with learning disabilities to apply for continuing care as any other citizen would.

  Examples:

—    Client with advanced cancer of the bowel deemed palliative: application made to continuing care, PCT unclear as to route the application should take and needed negotiations between a number of commissioners and leads. Issues compounded by the fact that when the case did go to panel they felt ill equipped to make a decision due to the person having a learning disability and not being an older person. Case therefore deferred whilst they sought further expertise / clarification

—    Across PCT's generally continuing care panels have built up expertise around older people in the main and are more used to dealing with nursing home care requests as opposed to care within the persons own home and flexible packages for younger disabled people.

—    The numbers of people with learning disabilities who have been granted continuing health care status are generally low which could reflect both peoples / carers lack of understanding of their rights to apply and PCT's struggle to understand the needs of people with learning disabilities in relation to continuing care.

  Much of the confusion could be due to people seeing continuing care as sitting within pooled budget arrangements and lack of clarity around where pooled / joint funding ends and continuing care begins. Pooled budgets are linked to capped funding for pre commissioned services / teams in the main, which means there is little flexibility to fund additional resources as required via continuing health care. PCT's obligations under continuing care cannot be capped. Hence it would make more sense for Continuing care applications for people with learning disabilities to go directly to PCT's and be heard alongside all other continuing care applications and judged in the same way.

  Its essential we concentrate on helping PCT continuing care teams / leads to develop their skills / competencies around learning disabilities and ensure they have access to specialists in learning disabilities when required as this would ensure a timely response to applications and avoid unnecessary delays in the process. There are 3 broad areas where continuing care tends to be applied for in learning disabilities which include:—

—	Physical ill health / medical problems.
—	Challenging behaviour / mental health.
—	Forensic problems.

  The former requires PCT specialists to lead on and for learning disability teams to help them build up their confidence in working with people with learning disabilities, as in many instances their learning disability is no longer the primary issue in such applications. The latter two would benefit from bolting learning disability experts onto actual continuing care teams to lead on these cases and for PCT colleagues to skill up the learning disability practitioners in continuing care, as is the case in some PCT's in relation to mental health. (here you see mental health nurses being employed on continuing care teams to give advice and assess the more complex cases)

Good practice examples re continuing health care & possible solutions

—	in mental health the above has been gotten around by employing mental health nurse as an advisor to the continuing care teams in order to do joint assessments and monitor / review such cases (Wirral PCT / Halton PCT)
—	in some areas panels are set up to have the skills to review any case that comes to it irrespective of client group as they have representatives from older people / mental health / Ld and generic health on the panel (Wirral / Halton PCT's )

  (2) Diagnostic overshadowing / disability blindness and the lack of skills and knowledge within NHS staff and care agencies to be able to meet the health needs of people with learning disabilities

  Despite much investment in this area locally and nationally we still have regular cases whereby the persons health needs are not addressed due to diagnostic overshadowing and the lack of understanding re consent to treatment and best interest. Although the new mental capacity act is set to try and rectify the latter, without significant investment in building the skills and competencies in primary and secondary care the issues will continue.

Examples:

—    GP referred man with Ld and poor verbal communication skills for an ECG as concerned about his health,. Results showed abnormalities. GP deliberated around whether to do further investigations and refer for an echocardiogram feeling this would be difficult as the patient couldn't verbally express any signs and symptoms.

—    Care agency requested GP see a man with severe learning disabilities as they were concerned about his health generally and the client would become agitated / anxious and disturbed if he had to be seen at the practice. GP visited and was willing to look at any specific ailment / symptoms but indicated to staff GP's weren't funded to carry out a generalised well mans check which would have been more beneficial to the person concerned

—    Woman diagnosed with cancer of the bowel. Was eventually referred to the learning disability team nearly 12 months post diagnosis when primary care staff were having difficulties with pain relief. Family members had told the GP they were not going to allow anything other than a paediatric dose of pain relief to be administered to the woman concerned despite obvious signs of excessive pain as they didn't want her to be drowsy. The GP found themselves at an in pass and was unable to prescribe anything other than paracetamol until the learning disability team and the district nursing team took this up with all concerned and clarified with the family consent to treatment from them wasn't required and that the woman actually needed pain relief. Even after establishing an appropriate pain relief regime care staff struggled with balancing the views of the family with the rights and needs of the woman they were supporting

—    Woman with severe learning disabilities and mental health problems whom became a revolving door patient via A&E, numerous admissions to hospital resulted in an extensive stay in hospital following collapse, cardiac arrest and excessive bleeding. Prior to collapse there had been Numerous issues with GP out of hours not attending but instructing care staff to increase sedation instead; A&E consultants struggled to examine her and as she was unable to describe her symptoms were unable to come to a diagnosis even though they were sympathetic to care staff telling them the pacing and moaning behaviours were out of character for her; one consultant when coming in to finding her on the ward yet again insisted on her being discharged home immediately resulting in her being discharged home at 6am in the morning

—    Care scheme where carer decided not to take a woman eligible for mammography screening to routine screening appointments based on their belief that it would be "too traumatic for her". The woman was later diagnosed with breast cancer. Carer also initially refused treatment on the client's behalf needing intervention from learning disability team and specialist nurse from the hospital to work through the issues with the carer and ascertain the views of the client independently

—    Person with profound learning disabilities at risk of loosing day care placement as has tracheotomy in situ and suffers from chest problems requiring suction via the tracheotomy, at home this is done by parents. Care staff in day centre unable to undertake suction via tracheotomy site and current policy leaves no scope for them to be delegated / taught the task. Primary care services as they are currently configured would struggle to respond to the young mans needs quickly enough as would be reliant on district nursing response as no on site services. Without access to the intervention he is at high risk of collapsing. If unresolved the person will not be able to attend the day centre as it would be putting the person with disabilities at to much risk

Good practice examples:

—    Use of a community matron for one young woman with complex health needs in western Cheshire to co ordinate all her care and ensure agencies are able to meet her needs

—    Successful Neighbourhood renewal fund (NRF) bid to introduce health checks for people with learning disabilities in the most disadvantaged wards in Wirral via GP practices (Wirral). Involved practice nurse time and LD nurse time undertaking joint health screening. This has led to the identification of numerous unmet health needs including possible prostate cancer; diabetes; high cholesterol etc

—    Health passports for hospitals alerting hospital staff of additional support needs of the person with learning disabilities (West Cheshire & Wirral)

—    Training sessions for primary & secondary care staff on understanding learning disabilities rolled out across Cheshire & Wirral via CWPNT

—    Anticipatory care calendar pilot which seeks to clearly identify symptoms for GP's / doctors to aide diagnosis (Wirral pilot site & due to start in Cheshire)

—    Use of consultant nurse & health facilitators to case manage people with complex care needs and ensure pre planning of any interventions where necessary. E.g. woman with severe learning disabilities and challenging behaviour requiring exploration of facial lump and tooth extractions. Facilitated pre planning meetings which included facio maxial surgeon, dentist, woman herself, family, carers, anaesthetist and hospital staff. Much pre work done including pop in visits before the appointment and face masks changed and given to her as part of desensitisation programme leading up to event resulted in successful treatment.

—    Countess of Chester hospital learning disability working group meets regularly to flag up issues and address access problems. Includes carer reps as well as hospital department staff and learning disability team representation. Have developed pathway for elective admissions which includes one point of contact for people going in who need additional support; carer identification systems and bleeps for them so that they can have breaks when supporting their relative on the ward etc.

  (3) Transition from children's to adult services:

  There is evidence to suggest that young people's rights are violated at transition with regards to:

—    Colleges, day centres, work placements and respite provision being inaccessible to people with more complex health problems or who are increasingly more technology dependant. I.e. people who need buccal midazolam / rectal valium as rescue medication for prolonged seizures; people who are PEG fed; people requiring things such as oxygen, suction, intermittent catheterisation etc. we have numerous cases of people whose transition into adult services has been hit with them not being able to access services at the last minute as there is no one adequately trained to carry out these tasks for them in these settings and/ or no one will take responsibility for ensuring the tasks are completed. PCT's say they are not their responsibility, social services the same and care agencies and families are left in the middle. The end result is the person often stays at home until a resolution is sought.

—    Equipment at transition becomes a huge issue, especially with regards to bespoke pieces of equipment (eg standing frames) and / or communication aides which were funded by children's services as they do not transfer with the young person. This potentially leaves people without much needed equipment and in the case of communication aides without a voice at a vital time in their lives

  Much of the above is down to the fact that:

—	Transition reviews do not have the right people around the table or indeed the planning is started much to late as adult services tend only to go to the last reviews in the final year.

—

A lack of clarity around who would be best placed to meet such health needs in ordinary community settings. District nurses are the main visiting health professionals but tend only to provide services to the housebound. Also a number of the tasks required such as PEG feeding etc are not ones they are familiar with and do not see them as part of their role. Another issue here is sheer volume of work undertaken by district nurses leaving very little time to become involved in training / skilling up care staff to undertake the procedure

—		Receiving services (colleges / day centres and respite units) do not have nurses attached to them as was the case in schools

—		There's no duty on care agencies to have to undertake these type of care tasks even though they have contracted to meet that persons needs

Examples:

—    Teenager needing intermittent catheterisation unable to access respite care as staff are not trained in the procedure and no resolution on who will train the staff. Plus day centre placement in jeopardy as no clarity on who will undertake the task at the day centre. Initially school nursing service did it as a good will gesture whilst in transition phase to ensure continuity of care whilst moving from school to adult day care. Its unclear whether such an invasive task can be taught to care staff in this situation or whether it needs to be health professionals who undertake the task. Infra structures within adult services do not exist to meet such needs

—    Young man needing chest percussions several times a day which would include whilst at the day centre and access to suction if required following this. Unable to have chest compressions done at the centre as although centre staff willing and able to undertake chest compressions was unable to be trained in the more invasive procedure of suction. It would be unsafe to do the chest compressions in this case without access to suction

—    Numerous people in day centre and some respite settings who require buccal midazolam or rectal valium as first line treatment for prolonged seizures unable to access it in these settings as organisations are unhappy about staff being trained in invasive procedures (despite it being a potentially life threatening situation) hence in these instances the client and care staff have to rely on 999 services if seizures do not subside even though the clients have a prescription drug that if administered would reduce the need for hospital admissions in most cases

—    Young woman 20 years old having to accept respite in an old peoples nursing home as the care staff in local respite services unable to meet her care needs and district nursing services unable to meet her high care needs

Good practice examples:

—    Complex care tasks policy developed in Cheshire for use across all client groups. It allows care staff to be trained to undertake some of the more invasive care tasks providing primary care staff train them and monitor / review people's conditions on an ongoing basis. (eg PEG feeding; suction; administration of rescue medication; toe nail trimming etc)

—    PCT in central Cheshire have gone some way to resolving day centre issues by having nursing services allocated to each day centre. However demand exceeds capacity and the restrictions around their posts means they are only able to train day centre staff and not provide training and support across care settings for individuals

—    Piloting of health action planning in transition: joint venture between Cheshire social services, young people with disabilities; parents of youngsters; CWPNT, Cheshire education services and central / eastern Cheshire PCT and Western Cheshire PCT. Pilot with 16 young people in this years transition. Aimed to link adult health facilitators into transition reviews and ensure HAP's contained all the relevant health information to help plan their transition appropriately

  (4) people fit for discharge within CWPNT in patient learning disability areas but have no where to go which continues to impinge on their day to day freedoms / lifestyles and denies them the benefits they would have been afforded had they been discharged ( benefits trap)

  Delayed discharges are apparent in all acute admissions facilities. However, within learning disability in patient facilities the delays can be significant with evidence of people fit for discharge but still on in patient wards several years later as there is no where for them to go or their placement requirements are so high cost that there are disputes around funding. This means that people still have to lead very restrictive lives even though they no longer require it, as in patient units by their very nature are somewhat restrictive as they are often catering for detained patients. Even though the units try to accommodate such people and put in community access wherever possible peoples lives are significantly and unnecessarily restricted through no fault of their own.

  This is further compounded by the fact that as they are still technically in hospital they have no rights to claim full benefits, hence their earning capacity is significantly reduced and so their ability to make choices over what they would like to do / how to spend their money etc is denied them, again through no fault of their own

  In addition for many people they are also unable to register with a GP of their choice whilst they are in hospital, or indeed miss out on routine health screening and community based health assessment / treatment which would be offered by their GP surgery because their GP is in another area to where they are currently residing

  Examples:

—    People in CWPNT in patient areas who have been there for a number of years and are in effect "delayed discharges" as there are no agreed packages of care to move them on. These people are unable to access full benefits hence their ability to go out and do things they would like to do is impacted upon

—    Young man in inpatient area was initially unable to access tissue viability services as the hospital site contract did not cover learning disability in patient areas and the community services would not see him because he was an in patient.

—    young man in inpatient area initially unable to access dietician services as this service is not available on the hospital site and he was not registered with a local GP therefore could not be referred to community dietician services for support re gout

  (5) National lack of accessible information and investment in developing such information

  As a trust we have invested much time and energy into developing leaflets in more accessible formats around everything from understanding mental health through to how to stay healthy. We have liaised with primary & secondary care teams and service users in the design of them but there remain the ongoing issues of cost for development and role out.

  Despite there being a national drive for accessible information there is no central steer or indeed commitment to ensuring information within health care settings is available in formats accessible to people with learning disabilities. You can find leaflets in different languages or in tape format etc but not fully modified for people who are unable to read and rely on more simplified picture based formats.

  Without accessible information we are reducing peoples ability to be empowered, take control of their lives and advocate for themselves. Making informed choices about health care becomes difficult and we make people over reliant on carers or others in their lives, when maybe with a bit more effort into accessible information the person could make some decisions for themselves.

CONCLUDING REMARKS

  As an organisation we are working hard to ensure that people's human rights are upheld both within our own organisation and when people with disabilities come into contact with primary and secondary care. We have focussed in this paper on giving evidence in relation to health care as opposed to any of the other areas the committee indicated they would be looking at as these issues are upper most in our minds at the moment.

  After talking to clients, family members and clinicians throughout this information gathering process there were a number of key themes that came through as needing a lot more than just local intervention. Needing organised national scrutiny, direction and guidance. These areas were:

—    In order to ensure peoples right to good health and the identification of health problems there needs to be an incentivised national campaign. Ideally having annual health screening checks as a national enhanced service which would be in line with other UK countries.

—    Further guidance for PCT's is required around the rights of people with learning disabilities and continuing care and the fact that all citizens have the right to be assessed for eligibility irrespective of their diagnosis

—    Investment in education and support to primary and secondary care colleagues is required regarding learning disabilities, human rights and consent to treatment / best practice. Some of this education needs to be embedded in professional's basic training rather than it be an "optional" subject in many cases. Relying solely on the mental capacity act would be a mistake. There needs to be a clear role out programme and significant investment in building competencies within clinicians and care staff in order to implement the act properly.

—    Higher National investment in accessible information and advocacy services with electronic connections for leaflets etc is essential

—    Transition from children's to adult services both in terms of more appropriate planning and investment in adult services to be able to meet the needs of young people who are increasingly more technology dependant in ordinary settings (work placements, colleges etc). Without significant investment here young people will be unable to access the ordinary lives we all take for granted.

1 May 2007