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Independent Living – NICE guidance – Equal Access to services for all with Cerebral Palsy

November 18, 2019

A guest post.

Cerebral Palsy (CP) is a devastating diagnosis that not only changes the life of the sufferer but their entire family. Children with Cerebral Palsy have very specific and wide ranging care needs and, although far from perfect, the NHS provides families with much need assistance in providing care.

Cerebral Palsy does not disappear in adulthood. The care needs for sufferers remain just as complex and extensive. However, the assistance from the NHS often appears to vanish. The National Institute for Health and Care Excellence (NICE) has recently reviewed the health services available for adults with CP and have found that services that are available for children are often not open to adults in many parts of the country. Suddenly families are left with a void to fill once those vital services are no longer available. The lack of services then impacts on quality of life of for these individuals and puts additional strain on families who have to deal with the day to day consequences.

NICE are responsible for improving outcomes for people using the NHS and other public health and social care services. They try to achieve this goal mainly by developing the guidance and quality standards for care that are used in England but also by ensuring services are equally available across the NHS. In theory this should mean that all services are equally available across the country with the same standard of care throughout. However, NICE have noted that whilst children have access to specialist services designed for their condition and clear care pathways are in place adults do not always have the same experience.

Many care professionals in this area will no doubt have experience of the drop off in services available to adults with cerebral palsy despite knowing all too well that the care needs for such individuals remains just as complex throughout their lives.

NICE’s recent report emphasises that “many adults with cerebral palsy need ongoing specialist management” and “that this is particularly important for people experiencing change or deterioration in function and when surgical procedures are planned.” Anyone who has been involved with adults with cerebral palsy will appreciate that the care required is very individual and is ever changing. NICE’s proposal is that once a patient reaches adulthood they are referred to a multi-disciplinary team (MDT) made up of different specialisms experienced in the management of neurological impairments. The MDT would then be the central point for ensuring a holistic and complete assessment of care needs is carried out on a regular basis and more importantly that the care provided and services involved are working together in a co-ordinated way.

This will no doubt be music to the ears of many health professionals who would welcome a collaborative approach to providing care to such complex individuals. I have seen first-hand the huge benefit for my Clients in having a case manager involved in complex cases co-ordinating care and treatment and ensuring that the various health professionals work in a collaborative way to maximise the positive effect of their efforts. One could only hope that the MDT approach being suggested by NICE would create the same effect.

I have also had the pleasure of working with Client’s with CP and their families, experiencing first-hand the level of specialist care and therapy that is required to properly support suffers. Experts in areas such as care, speech and language therapy, accommodation, occupational therapy, assistive technology and physiotherapy are required almost universally to properly assess the care needs of a Cerebral Palsy sufferer. When dealing with the future care needs of Clients with Cerebral Palsy we have the benefit of claiming the costs of any care or treatment on a private basis to ensure that where NHS services are not available our Clients can source what is required privately. This experience brings to light the financial costs in providing suitable care to both children and adults with Cerebral Palsy and in the current environment of austerity and cuts to health budgets in the name of finding efficiencies leaves individuals relying upon social services extremely vulnerable to losing that support which helps provide them with a decent quality of life.

I have sadly also seen the immense impact that caring for a child with CP into adulthood has upon the families providing that continuous care. When we are working with Clients and their families we can ensure that provisions are put in place to maintain a continuous level of care especially when the parents of sufferers advance in years themselves and cannot provide the level of care that they used to. Again one can only hope that the MDT approach being suggested would also take in account the circumstances of individuals and their families providing a more holistic view of the needs of everyone involved.

Looking into the future I hope that NICE implement the suggestions detailed in their review as soon as possible. It is disappointing to hear that patients suffering with such a life changing condition fall out of the system when they reach adulthood whilst their care needs remain just as challenging and ever changing. In the meantime parents and families of adults with CP may wish to push for regular reassessment to ensure that services such as physiotherapy, speech and language therapy and occupational therapy are engaged if required to ensure sufferers maintain their highest quality of life. Health professionals may also benefit from the co-ordinated approach seeing more benefit for patients arising from the great effort they put into their care.


            James Anderson, Solicitor in the Clinical Negligence team at Lime Solicitors

2 Comments leave one →
  1. Random Bloke permalink
    November 18, 2019 10:19 pm

    It actually gets worse if your loved one was born with a not-so-widely recognised disorder (which encompasses CP as one of the “moving parts”), because while the CP is a massive factor, they are recognized for the disorder it is a part of, which due to being poorly known has no real specialists for, allowing local services/health providers to “cop out” of providing the level of help they would have to provide, if that person were plainly diagnosed with CP on the top of their file.

    I say this as a unpaid family carer for an adult born with Lesch Nyhan syndrome which affects 1 in 2 million boys born in the UK (between 30-40 living), with a global average of 1 in 380,000 births. I can’t go into details of the symptoms of how the disorder works because it is very graphic (you may research it, I advise you disable images) but it typically has a prognosis of mid to late teens.

    The support on offer is poor for sufferers of this age demographic alone, and if they defy the odds and actually survive (thanks to excellent care) into adulthood, their 20’s, 30’s or 40’s even which in spite of medical advances is a rare feat itself… they are rewarded with seeing their loved ones who raised them fall ill or pass away due to the lack of help, usually ending up with the person moving into care, because of the extreme nature of the disorder this could often mean an ACU, and the story ends there.. because these are some of the most vulnerable (but lovely) persons you will ever meet, but these glorified institutions are little more than a death sentence for them.

  2. Random Bloke permalink
    November 18, 2019 10:27 pm

    Apologies for the poor spelling, where it says “ACU” I meant “ATU”, assessment and treatment unit which is basically a private hospital (think Winterbourne and the like) which can typically cost the NHS in the region of £3000 to £6000 per week for each placement for the sort of quality of care which would cause public out cry if it went on in an animal Vet surgery let alone a human being.

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