Foot Health and Cerebral Palsy Research

Richard_Scope

Foot Health and Adults with Cerebral Palsy

A report assessing the responses to the call for evidence identifying the need for Podiatry in Adults with Cerebral Palsy. A survey was conducted with the help of Scope and CPAAUK. This project started in 2023 as a result of several members of Cerebral Palsy Adults Advice UK (CPAAUK) and the Scope CP Network seeking individual advice on foot health. These online communities uses the Facebook platform and Scope online Community to come together; to share advice and support with each other. All the members of the group are Adults with Cerebral Palsy and the survey was completed online with the technical support of Scope. Prior to the survey being devised by JM (Jean Cantley-Martin, MChS, retired podiatrist,) KW (Karen Watson, co-founder of CPAAUK) and RL (Richard Luke, Cerebral Palsy Programme lead for Scope) members were publishing photographs of their own foot lesions and the problems they had. They were trying to find advice and support on managing their foot health and where to source treatment.

In 2023 a total of 10 posts were generated on the CPAAUK web pages. In April 2023 The National Bobath Cerebral Palsy Centre held an online Zoom 1 meeting discussing foot health attended by 14 Adults with Cerebral Palsy and presented by Barry Francis from the Royal College of Podiatry. These 2 presentation was part of an ongoing series of health topics offered to the Adults group supported by the National Bobath Cerebral Palsy Centre. To discover the current status of NHS opportunities for access to foot health care in June 2023, the current NICE Guidelines for Cerebral Palsy, 2019, were downloaded and read by JM. It was very apparent that the guidelines contained no mention of supporting long-term mobility and foot health except in consultation with specialist physios and medical staff. There is no input from either Podiatry or Orthotics; both professions are registered as Allied Health Professions and this gap in provision is not recognised or addressed. The advantages of supporting some level of long-term mobility are not recognised, except with the provision of wheelchairs.

Other outcomes of the omission of foot health from the NICE Guidelines include the loss of NHS health provision and opportunities for professional support from ICBs, service providers and commissioners. There is a reliance on private provision and family support which given the age and lived 1 2 https://bobath.org.uk rcpod.org.uk 1 experience of the Adults in this group, including financial constraints, is not always possible or available. In March 2022 the then All-Party Parliamentary Group on Cerebral Palsy published its 3rd Report on “Barriers for Adults with Cerebral Palsy on achieving Full Life Participation: access to health care services and progressing at work” using the evidence of the lived experience of Adults with Cerebral Palsy to identify the gaps in health provision including foot health care and to call for changes. Unfortunately, this APPG is now shown as defunct since 2023. This survey follows on from that call for change and demonstrates that little if anything has changed for the better in the time since the report was published, and the need is present and acute.

The Role of the Survey The aim the survey was to identify the current level of personal knowledge of the respondents, regarding their foot health, any ancillary issues and how they were currently meeting their needs. We also asked about the awareness of knowledge concerning the status of Podiatry as a Registered Profession. Other questions were asked about age range; type of Cerebral Palsy; mobility or otherwise; other health conditions, both comorbidities and other diagnoses separate from Cerebral Palsy; where the respondents lived and their experience or otherwise of ease of accessing foot health care and who potentially helped them with their footcare. Thinking about their foot health the survey asked questions about the current status of their feet, footwear and the provision or otherwise of prescription footwear and orthotics. As this was a foot health survey no questions were asked about Gender or Ethnicity.

If it was felt appropriate to repeat the survey advice would be sought as to the need to include these 2 factors in the questionnaire The collation of the results was completed by Abdi Gas from Scope who ensured that we complied with our responsibilities under GDPR. The data was fully anonymised before it was audited and used for this research. The Outcome of the Survey 64 people replied and the results were interesting. The majority of the respondents lived in England, 55, Scotland 2, Wales 7 and Northern Ireland 0. The group were aware that health is a devolved matter for the Parliamentarians, and the political influences regarding funding in the different 2 countries could be reflected in the number of replies. Additionally, at the time of this survey the NI Assembly at Stormont was in abeyance.

 The Age range for the participants was separated into decade groups; 18-24, 25-34, 35-44, 45-54, 55-64, 65-74 and 75 and over. Replies came from all age ranges except the youngest, 18-24, and the largest group were the 45-54, 19 or 30% of the group, followed by 35-44, 15 or 23%. Four different forms of Cerebral Palsy were identified by the group; Hemiplegia 15, (23%), Diplegia 25, (39%), Triplegia 3, (5%) and Quadriplegia 21, (33%). The spread of these answers reflects the diverse, umbrella nature of the Cerebral Palsy diagnosis. Regarding mobility 39 participants or 61% said they were ambulant with the remaining 25 people identifying as wheelchair users. Of the ambulant group 28 or 65% used some form of aid whilst the remaining 15 respondents said that they walked unaided; they represent just 23% of the whole group with the other 49 (77%) participants needing some form of assistive technology. When considering Adults with Cerebral Palsy the wide ranging nature of the diagnosis is frequently accompanied by additional comorbidities including Epilepsy, Mental Health concerns, Sensory issues and Learning Difficulties.

The 64 participants were asked about other conditions and 57 replies were received covering 40 other diagnoses which represents replies from 89% of the group. Various Mental Health concerns were reported 14 times, Epilepsy 8; Sensory Impairments 11; Learning difficulties and Dystonia 3. The separate diagnoses included Type II Diabetes 3; Osteo Arthritis 6; Cardiovascular and Raynaud’s 6; Spinal and skeletal concerns 8; I.B.S. and other digestive tract 5, Long Covid 1 and the rare diagnosis Idiopathic Intracranial Hypertension 1. Not all the answers are listed here just the most frequent and challenging. It was clear from the answers that the participants frequently met the challenge of Cerebral Palsy, multiple health concerns and were also experiencing foot health problems.

The specific podiatric questions started with:       
Can you reach/see your feet easily?
Yes 28.1%, No 71.9% 
Do you have hard skin?
Yes 75.0%, No 25.0% 
Do you have thickened nails?
Yes 70.3%, No 29.7% 
Are your nails discoloured?
Yes 46.9%, No 53.1% 
Do you have Orthotics/Footwear on prescription?
Yes 50.0%, No 50.0% 
Do you have a problem with getting footwear?
 Yes 68.8%, No 31.2% 
Are you aware that Podiatry is a registered profession with the Health and Care Professions Council?
Yes 73.4%, No 26.6% 
 Do you currently have Podiatry care?
Yes 45.3%, No 54.7% 
If you have a lack of Podiatry care, has this had an impact on your mobility? If yes - have you tried to address this?
Yes 47.5%, No 52.5% 

Podiatry Care was sourced from NHS by 21 participants and 20 others saw private practitioners. When there is no NHS provision or private care is unaffordable, care was provided by family or friends for 26 participants and 35 went without support, 54.6% of the group. This suggests that although some professional support was available it was insufficient or unaffordable to meet all the needs of the respondents.

In summary, the majority of the participants did not have bilateral dexterity, used some form of assistive technology to support their mobility and found using tools difficult and struggled to personally manage their footcare. The age of onset for foot pathologies was around 30 with the majority reporting problems in their 50’s. The most common pathologies are hard skin/callus and nail deformity; the most common concerns were the provision of trained, affordable care and access to a diversity of well-fitting footwear. The final question was an opportunity for the participants to tell their own stories.

There were 62 replies given and a full copy of the responses will be attached to this report. The question asked for feelings and their lived experience. The stories are powerful; speak of need and lack of resources for this community as they try to remain independent and foot health. A detailed audit of the replies showed some common themes.

1. Poor or absent service provision, both in the NHS and private practice.

2. A lack of professional awareness and education as to the needs and recognition of the diverse nature of Cerebral Palsy including the need to find suitable accessible, long-term clinical provision.

 3. Long-term physical health changes in the feet and toes, leading to persistent, frequent and underreported foot pain, neuropathy, all types of nail and skin deformity and altered gait patterns. The physical challenges of Cerebral Palsy can exacerbate the mental health comorbidities, including fear and stress associated with this condition.

 4. Financial constraints, including budgeting for private care, whilst in receipt of benefits, were mentioned as reasons for not having treatment although the need for treatment was acknowledged. As were concerns for future care when the current arrangements within the family were no longer viable. 

 5. The lack of suitable footwear that can work alongside orthotics, be practical and yet not be glaringly obvious as prescription footwear. The answers described the need for a sense of style and individuality alongside footwear that is fit for purpose.

 6. The additional health diagnoses e.g. Type II Diabetes and poor circulation were recognised as reasons for seeking specialist support, not ignoring the problem at the increased risk to the individual.

 7. The importance of self-esteem and independence. This is an example of the responses given “I feel it is dangerous and unsafe. It causes pain at which I flinch if not expected which can cause me to fall. I have struggled to cut my own toenails but it is a moving target, my toenail, with the moving weapon i.e. sharp scissors. I am now even more scared because my diabetes is not well controlled and any cut could take time to heal or necessitate amputation. I am now looking into private podiatry, but this will be hard to afford. I have repeatedly asked for a referral from the GP surgery nurses, only to be told that they are only taking on urgent cases.”

One unexpected answer to Q11 was the description of a negative response to the feet being touched from just 1 participant. Exaggerated response, the startle reflex, to stimulus especially noise e.g. fireworks or loud music, is part of Cerebral Palsy. Whilst loud sound is the most frequently reported trigger; it is not surprising that this participant reports a reaction to touch, another of the five senses in a similar manner. They gave this fact as a reason to refrain from seeking support.

 Reflection on the Survey

 “Cerebral Palsy is a lifelong neuromuscular condition caused by damage to the brain linked to the development of movement and posture. The incidence is 1 in 400 of all live births”; source National Bobath Cerebral Palsy Centre.

The lived experience of the participants of this survey is that although they are aware that this is a lifelong challenge, current health provision seems not to understand this and so was either unwilling or unable to accept the need for the preventative nature of continuing podiatric care for Adults with Cerebral Palsy. 64 people chose to complete the survey.

CPAAUK has a current membership of 1,500 from all parts of the UK Scope’s online community has over 5,000 members living with Cerebral Palsy and Scope’s CP Network has 162. Some individuals could belong to all groups but this was not discussed for this survey.

As an online forum the administration team at CPAAUK are approached to support surveys into all aspects of adult life as information is gathered to demonstrate that people with Cerebral Palsy live full lives, intersect with different agencies and deserve the opportunity to participate fully in society. Scope equally is approached in the same manner and has to balance the needs of the membership with the requests of researchers.

This participation is mediated through any health support being given by health and social services but the level of need is frequently under-recorded. It is this lack of information that leads to services being withdrawn or downgraded. It is believed that there are 130,000 adults with Cerebral Palsy living in the UK today with more being added each day as children and young people age out of Paediatric services and become full members the adult community.

 This survey was generated from the desire of some Adults with Cerebral Palsy to find solutions to their ongoing foot health issues where they lived. As competent people they had recognised the need to remain foot healthy and were seeking affordable, local solutions, with the aim of retaining their independence and a useful degree of mobility. Their challenges included the effect of Cerebral Palsy on their posture, coordination especially dexterity, visual and sensory acuity and foot shape. Using variety of assistive devices including wheelchairs could compromise where, when and how they were able to source appropriate care. Whilst the Guidelines mention family support for the older participants in the survey this could mean asking a child or young person to complete the task. The social and societal dynamics of home life are not covered in this survey but from some of the replies to Q11 it is clear that this is not desirable arrangement and as adults the participants would prefer to seek professional support. The benefit to themselves would be a reduction in pain which in itself can be a trigger for involuntary spasm and loss of mobility.

The benefit to society would be the development of a dedicated care pathway by suitably qualified professionals with the aim of retaining all forms of personal autonomy which is key to independent living. 6 The internet is regularly the first place of information gathering; “Dr Google”. The NHS web pages reflect the NICE guidelines and although Cerebral Palsy is discussed there is a focus on paediatric services and transition to adulthood. The 50+ years of adult life are not considered or mentioned. The Scope Online community pages allow members to post about issues including foot pain. The results of the survey emphasise the early onset of foot pathology and pain, starting in the late 20s with a peak in the 45-54 age group. This is the period of life when society expects its members to be in full employment and yet services that would enable that activity are not available to this group. Additionally, there is no discussion within the NICE guidelines of the possibility and incidence of additional diagnoses. Adults with Cerebral Palsy are not exempt from being diagnosed with other illnesses.

The participants in this survey noted 40 other diagnostic identifiers in their lives. Some were comorbidities, Epilepsy, Sensory Loss, Mental Health issues and Learning Difficulties. Other diagnoses that are present in the general population and there is no reason why they should not be present in the cohort of this study. These pathologies comprise Heart Disease including Raynaud’s; Type II Diabetes; Arthritis and Neuropathy. Any one of these problems can affect the foot health as well as the quality of life and life expectancy of the person diagnosed and the adults in this survey were managing both Cerebral Palsy and these other challenges. This is where appropriate professional support can mitigate the effect of all the pathologies and maintain independence with clinicians who understand all the diagnoses.

 As previously noted two professional groups, Podiatry and Orthotics, are not included in the list of NHS approved professions in the NICE Guidelines that are recommended for Adults with Cerebral Palsy, their families and care support teams. An internet search including NHS online resources give little reliable information for anyone looking for safe, unbiased literature on footcare and yet I have found web-links to appropriate podiatric care in both Australia 3 and the US . Podiatry is seen as a key member of the team that provides 4 support to the Adult with Cerebral Palsy in those countries. I no longer have access to any medical literature search engines; my results are those that any member of the general public would achieve including looking at the public pages of the Royal College of Podiatry’s website.

Mental Health concerns are recognised as comorbidities with Cerebral Palsy. The stress and uncertainty of living with CP every day are principal triggers for 3 4 www.optimisehealth.com.au www.cerebralpalsyguide.com 7 depression, fatigue and additional issues. Having to justify and explain what it means to live in a body that has poor posture and involuntary movement and meet the sometimes unreasonable expectations of society, “Haven’t they found a cure yet?” “I thought it was just children who had Cerebral Palsy?!” means that any opportunity to resolve even the simplest issues of regular footcare can help with improvements in mood and mental health.

If walking is easier or pain free, if painful nails are managed appropriately then mood can be improved and whilst it might seem a small thing, anything that helps an adult’s mental health and self esteem is beneficial. The biggest challenge arising from this survey is the size of the cohort that replied to the invitation to participate. They are a very small group, and yet it was possible to identify some common themes and concerns. Some of the reasons given for not completing the survey included, “What difference will it make to our lives today?” “My feet are okay.” “I don’t need footcare at the moment.” All very valid comments and reasons to repeat the survey at some point within the next 2-3 years; looking for changes in attitudes and service provision. Recommendations arising from the Survey To be useful this survey has to offer ideas and maybe solutions to the problems identified.

The 64 people who shared their lived experience deserve to be heard and their ideas acted upon.

1. As matter of urgency representations should be made to the NHS, commissioners and other influential bodies to include Podiatry and Orthotics as key services for Adults with Cerebral Palsy. Citing as evidence the developments in other First World countries where these professions are part of Multi Disciplinary Teams with Physiotherapists, Nurses and other medical specialities.

 2. To do this will involve rewriting the relevant NICE Guidelines using this survey and other research as evidence of need.

 3. To develop the learning and experience of Podiatrists to be able to treat and support Adults with Cerebral Palsy. Research by the National Bobath Cerebral Palsy Centre confirms that people with Cerebral Palsy respond well to hands-on therapeutic interventions. Inter-professional developments between interested clinicians should be pursued.

 4. To open up accessible clinics and provide treatment throughout the UK. This survey has shown that Adults with Cerebral Palsy can and do have 8 unexpected additional pathologies and comorbidities which carry additional risk to foot health.

 5. To recognise the whole life course nature that is Cerebral Palsy and plan for ongoing treatment starting at a much younger age than is currently provided.

 Acknowledgements

My thanks to the 64 participants of this survey; without your willingness to complete it, it would be just an idea at the back of my brain. Thank you also to Karen Watson, Richard Luke, the teams at CPAAUK, Scope and the National Bobath Cerebral Palsy Centre for their input and support. Any errors or mistakes are mine. Jean Cantley-Martin. March 2024. Written during CP Awareness Month 2024